MIDDLE-AGED WOMEN 40-60ish

Talked to hubby last in night. He worried that the insurance won't pay unless the doc says I need it. He wants me healthy over everything else but he trusts the doctor. I think by the time we get to surgery in 6 months it will all be OK. I do not want to do this twice.

kathe, the loss of sensation we talk about in a breast is not from a lumpectomy (I had four before my double mast), but the lack of sensation when you have your breast removed. All those wonderful sensations are gone, even though skin is still there. I actually asked my surgeon where those wonderful nerves from the nipple snapped to when they were cut. He told me to have fun looking for them...hehehehehe!

As for nodes - thank GOD! that surgeons aren't taking as many as they used to!!! That was the harder surgery part to recover from and has blessed me (not!) with truncal LE (mild). I HATE hearing that someone had 2 out of 4 nodes positive so the surgeon went back in and took more...WHY?????????? The nodes did what they were supposed to do!! They weren't ALL positive, so why take more?? You were going to get chemo probably anyway, so what was the point??????? I really DO think they are streamlining and customizing the process to the individual, but the individual does have to gain knowledge, too. THIS is the kind of information we all need from actual PATIENTS, not someone sitting in an office somewhere typing up a website!!!

I had a general surgeon for my masts (no recon) and my scar line is BETTER than others who had breast surgeons!!! I showed it to some bco ladies here and they were envious of my clean, flat line. They had bulges and dog ears and folds and basically a crappy line. I had told my surgeon I had NO intention of recon and he respected that. I think a breast surgeon leaves excess skin because they want to SAVE and/or rebuild a breast. It's in their nature....

Back to my "good" breast (right one). Well, I bled all over the mammo machine from my LEFT nipple. Then they wanted me to get an MRI on my RIGHT side due to "architectural changes" (calcifications) and I was upset they were ignoring my left side - MRI did both sides thank goodness!! Then they wanted an ultrasound-guided biopsy on my RIGHT side!! The tech took me to the department and kept insisting it was the right side and I kept saying LEFT!!!! Well, she left me there and then came back 15 minutes later while I was still waiting and KNELT down in front of me and took my hands, said I was right, it was the LEFT side and GOOD LUCK.

Gee...thanks for the warm fuzzies, sweetheart!! 

I was spared the lymph node dissection because I argued that since I was Stage IIIc and those other nodes could not be removed, relying solely on chemo and radiation should be good enough for my poor blameless armpit if it was good enough for my collarbone node, etc.  I was so bummed when I left the surgeon's office where she had insisted it was standard protocol, but she had actually listened to me and consulted with her partner, my MO and RO, and the other doctors on the tumor board.  They all agreed that if my post-chemo PETscan was good, I didn't have to be subjected to "standard protocol".  My MO was happy to have an excuse to order a post-chemo PETscan, and said that the trend was towards not removing so many (or any) lymph nodes.  That second PETscan was absolutely clear and I consequently had a quick recovery from a bilateral mastectomy without ALND.  There's still a risk of lymphedema due to having radiation on that side but it must be a much lower risk than having both surgery AND radiation to the same area. 

Barbie is absolutely right, we have to ask lots of questions, do our homework and speak up for what we want, good doctors will respect that. When I had lumpectomy 3 year ago there was a second questionable spot near the first and they wanted to do a second biopsy, my husband spoke up and said if you are going in anyway why put her through another biopsy? Doctor said you are absolutely correct.

You're right Kathec, it all sucks, but grateful to have people who understand what we are going through. Hope you all have a restful and peaceful weekend. Stephanie

Calico, gotta admit I was loving your post until you said you would look like a "total freak" with clothes on (and a flat chest from DMX) and a double mast. I have had a double mast and go flat. Dead flat. No recon, no foobs. I have "won" so far over cancer and am NOT ashamed of my victory! I don't NEED fake breasts to feel normal. I am so sad that you do......forget the tattoos over your fake breasts, who cares?

I am a large woman, many on bco have met me and I do carry my 210 pounds well, even though I am only 5'4.5". My belly is larger than my chest, yes. But it's the way I stand and project myself that counts. Because I am not ashamed of my cancer, or embarrassed, or guilty or whatever it is, I stand with pride that so far, and God willing, many more years, I have won. I didn't get chemo or rads and am not on an AI, either, but you'd better believe I didn't NEED recon surgery!!

Edited to add the word "recon" to the last sentence. I DID need surgery to get rid of the cancer. But I certainly didn't NEED recon. No one does. They desire it. They want it. They bitch and moan till they get it. Someone coerces them into it. Their DH's demand it. They have no self-confidence. They feel useless without tits. I have NO friggin' idea why many women get recon but after almost 6 years on this forum I've heard all the reasons, but not the truth.

barbe, every one is just different, the heart wants what it wants. if it comes back on me, i would want another lumpy, cause to me, there is more "room" if it comes back again after that, i would not want it on my chest wall. they can get out the melon baller, especially since i went thru all of the trouble of rads. if i had to have em both off, i dont want recon, cause i dont want my muscles messed with. at all. and both just for the sake of symmetry.

Barbe, I am not sure what "truth" you are looking for. How people feel about the tit-less thing varies a great deal, and I do not think someone is somehow "better" or more enlightened for going flat.

To each his/her own I always say. No one should be made to feel like they are making the wrong choice, it shouldn't even be a debate. We do what will make our recovery from this easiest for us individually.

Barbe, fair enough, but I am still confused about the "truth" thing.

Barbe, I feel compelled to address one of your posts.  First I'd like to say that I generally love your candor and that you don't mince words.  But your statement "I don't NEED fake breasts to feel normal.  I am so sad that you do.  Forget the tattoos over your fake breasts, who cares?" left me stunned.  You know our decisions are all individual.  You are a strong, confident woman and I'm glad that you are happy with your decision not to do recon.  But my choice was to do recon to try to get back to the look of the pre-surgery me because I like myself and wanted to put the cancer experience behind me and look as normal as possible TO MYSELF first, and others, because self image is important to me.  And the suggestion to forget the tattoos...!  I understand you said what you did because that is how YOU feel, but to tell someone you are sad about their desire to do recon was a misstep, in my mind.

The tattoo comment was because the OP (original poster - you guys remember the "rules" where you aren't allowed to mention another member's name...right?) said she would get a flower tattoo rather than nipples.

My comments were MEANT to rustle up some feathers!!! Again, that was the point. I know I hurt some of you that have followed me in my 20,000 posts over almost 6 years, and I am sorry, but felt compelled to show it from another very important side. Those of us who do NOT need recon because we DO "like ourselves"! In fact, I love myself so much I just couldn't put my body through the 8-14 hours of micro-surgery and then years of tweaks and adjustments! I love you all and am sorry I have stunned some, but I got a knee-jerk reaction to that post (obviously) and I don't edit or change my posts when they have been responded to or others can't see what the following posts are referring to. May this be a lesson to all.

As for the truth comment, I hear a lot of "my DH made me", "counsellor told me I had to so I could get closure", "my friend said I'd always be reminded if I didn't" and on and on and on. It heartens me to hear "I did it because I WANTED TO". Full stop. We don't need to hear "wanted to so I wouldn't feel like a freak". That makes those of us who didn't get recon think that those who did see us as freaks? And, to say you got recon because you like yourself, well, that is very admirable, but see my comment above. At least that was an honest comment. 

This is ALWAYS a hot topic among the recons and the nots. I was invited to a Facebook page by a member here called "Flat and Fabulous" (the FB page, not the member ) and all they talked about was how to "hide" their flatness and what are the best foobs!! I'm sorry, I am truly FLAT and fabulous!!!

I know I am very lucky I have adjusted so well and truly didn't know it would go like this. I thought I might break-down over the passing years, but further surgery for removing my thyroid after 2 biopsies, 4 more biopsies through-out my torso and a pace-maker inserted, I am truly glad I didn't chose an optional recon.

Love you all, and thanks for the PMs...they validate me.

I get your point elimar, but I don't WANT to be identified by the woman with breast cancer! It's just not that obvious if you don't try to hide it! I wear flat T-shirts all the time as well as stretchy tops that cling to my chest. I worked with someone for six months before mentioning it and her jaw literally hit her desk!! She was absolutely stunned!!! (This is only one person of many who have been surprised - most people say "Oh, but you are such a happy person, I had no idea!" - like breasts make us happy....sigh.) Anyway, this one gal was shaken and began to apologize saying she had not noticed and hoped she hadn't said anything in the past 6 months that might have offended me....uh, no. We think people are looking us over and checking us out, but really, they are worried MORE about their own image and being checked out!! I'm sure a couple of guys have figured I'm just flat and sucks to be me, but that doesn't matter to me. On another occasion I had an old acquaintance say "OMG you lost a TON of weight!!!!!" I had to laugh as my breasts were "only" six pounds (think of 3 pounds of chicken wings on each side to get perspective) and I told her that I had just lost my shelf of breasts that entered the room before I did!

My arthritis is better, my posture is better, I actually probably have a better self-image without my huge breasts. I was at least a 38D since grade 8, so it's been a long haul with a big chest (even had a reduction at 45 before my diagnosis at 50). I often find it's smaller breasted women that are happy to get "new bigger breasts" with recon and I feel sorry for them as they age. They have NO idea how damaging that load is to their skeletal system!!! My neck arthritis was so bad I had bone spurs poking into the back of my throat and choking me when I tried to swallow bigger pieces. I've heard of many, many ladies that have chosen to de-construct as well....be careful what you wish for.

The point of my post WAS to show how HURTFUL comments like that are!!!! For the third time, now the fourth, I repeat, it was INTENTIONAL.

I have never posted a post like that, but didn't want to hear the usual "oh, we all do what is right for us" and let a comment like that pass without those of you who GOT recon feel what it is like to read a hurtful post about your decision!!!

Is everyone on the same page NOW?????