No reconstruction- Happy w/your decision?

Lilylady--I just noticed your address and you live very near to me!  I live in Fairfield, OH and at one time, I lived in Seven Mile! (I lived in Trenton and went to Edgewood High School). I will pm you soon!

I am shocked  how many professionals have little sensitivity for breast cancer patients!  Here in Fairfield we have a store called "Jags" and it is full of mastectomy clothing!  I wear a 40 band size bra and they had no trouble finding (and fitting me) with a C cup that fit nicely.  I found a lightweight prosthesis there, too.  The bra from the "boutique" is a compression bra and I wear it often but my favorite way to wear the prosthesis is to slide it in a soft cotton "pocket" and place it under my front hook cotton bra.

HI all you laidies on this page. I have been reading for a few months now. Thank you for your wealth of info.

I know we are all different, but can you tell me how long the drians were kept in before removal of them after a double mx. I think I will be going the non recon route, as I had rads ten years ago and would not be a good candidate for implants. Do not fancy the Diep op. Trying to see if I can get used to having no boobs at all. I am only a 34B, but the thought of nothing being there is hard for me. I the thought of buying tops I live in a hot climate it is hot all year round. I also teach yoga and wear lulolemon tops, wondering if I will be able to wear them if I have both breasts removed.

I am sorry I am babbling on, I never thought I would be here again after ten years out of breast cancer. Thank you for listening to me

Hauntie, I'm glad to hear that your surgery went well.  I wish you calm while waiting for the pathology.

Sam1, there are a lot of threads in this forum that you'll find helpful.

Hauntie, wear it at night at least. It must bug your drains though. I had nothing and developed a seroma. I think if I'd had a binder on I wouldn't have gotten one!

Nagem, thank you so much your post makes me feel better today

Welcome back, Hauntie.

 It sounds like everything went very well for you. You have my wishes for a speedy and comfortable  recovery.

Post-surgically, over just the dressing, I wore soft cotton shirts that opened in front and some soft silky cami's I could step into. I didn't want anything to pull or push on the drain, which I had in just short of three weeks.(Actually, even at that, I think the drain got pulled a bit too soon. I've been back for one aspiration and expect I'll go again next week for another.) My wound was dry and healing so well that at about the four day mark I removed the dressing and had just the steristrips open to the air under the same soft shirts. I wore a fanny pack to hold the hemo-vac and the excess tubing. I learned to keep the tubing covered because it was all to easy to snag it on a door knob. Ouch! Lesson learned. 

I was able to shower 48 hours after the surgery. I tied a cord around my neck and pinned the hemo-vac onto it. I had DH use surgical tape to tape a zip lock bag over the dressing to keep out the water while I was showering, but after 4 days I didn't bother with that.

Since I've had the drain out the most comfortable thing to wear has been a stretchy cami that has a shelf bra. In fact, I've been wearing it night and day. It seems to have just enough compression to keep some fluid at bay and there's some support for the remaining breast. As well, it comes up high enough under the arm not to irritate the SNB site.

May your drains be banished soon. 

I'm so happy with my new flat look. Flatties of the world unite and burn your bras On another BC listserve, I belong to, when you have had BMX you become a member of the B flat club. Consider me a proud member. I wonder if they send out some kind of certificate or t shirt or somethng. I felt so differently about this when I had to have my first MX. Being one breasted for almost 18 years and having the other breast scarred and numb from a breast reduction, I'm sure has greatly influenced how I feel about my breasts (or lack of them) now. I feel like they are so over rated.

That same BC listserve says that you receive DISH status 5 years after your diagnosis - whether NED or not. DISH stands for - Damn (as in how fantastic is this) I'm Still Here!!! November 4th I celebrate 13 years of DISH status.

Rowan - my drains have really slowed down. One was only only 35 over the last 24 hours. I'm praying they both come out on Thursday.

I know you're just starting this journey. The waiting for the oncotype score must be agonizing. Actually, I don't even know what that is. They didn't do it 17 + years ago. The B flat/DISH listserve I belong to is www.bclist.org/ 

I was a member when it first started, dropped for a while, went back again a few years later with a BC scare and rejoined when I needed input re having a PMX. The neat thing is all the posts are archived. I searched my name and came up with the list of all of the posts I had written over the years. It was very enlightening how my to see how my feelings re BC have changed over the years.

re DISH status - It's a long journey, but keep putting one foot in front of the other and doing what needs to be done along the way and you'll get there..

  Has  anyone gotten a prescription for  anything to diminish scarring? They advertise Metaderma (I think that's the name) but I heard there is a prescription cream called Silvadene? I am going to get drained again tomorrow and am going to ask my BS about it. Or if you guys have found anything else. I am 2 weeks post-op today and the incisions look great-I just want to minimize scarring as best I can.

    As far as binding or compression bra. I wore mine for 3 days then she said it isn;t necessary after that. I also asked if it would help keep this fluid down. I went fri and she drained 95cc from each side. I am already full again-I go tomorrow morning and then again on Friday.

I've been reading these posts now for months and am convinced I want to pursue BMX - no recon.  I'm still angry for being talked into 2nd lumpectomy on same breast.  My anxiety levels have not resolved after 4 years and no cooperation from onc to get an "occassional" MRI. I've had enough. Hugs to you ladies for your courage and I thank you for sharing your recovery details. I see my BS end of Sept and we will have our "talk" AGAIN.  Love the "DISH" status !!!!

Hello all, I'm about to have a bilateral mast.  After reading posts by many women on ths site and others regarding the problems and pain with implants and flap procedures I opted for nothing.  However, after I finish chemo and the rad under my arm for nodes, I am going to have the full redonstruction using BRAVA and fat grafting.  The plastic surgeon who pioneereed it is Dr. Roger Khouri at the Miami Breast Center.  But he has been teaching others how to do it and I spoke to Dr. Lauren Greenberg in Palo Alto this morning who took his classes and is setting up to do the procedure the way Dr. Khouri does it.    No surgery, no complicatoins.  Natural breasts using your own fat. 

I have read on other posts that there are some other doctors who do this also, one in New Orleans Dr. Khoobehi.  If you go to the micro fat grafting forums there's a lot of info and results from women who have gone to Dr. Khouri.

 So anyone who is interested in having breasts again but don't want implants or flap procedures there is a new technique that is a miracle.

Kathy

Hi i need your advice regarding prosthetics, today i went to a store that specializes in cancer needs. the owner told me that if i dont get a heavier form than the micro bead one that i bought from tlc then my posture will be off and i will have neck and back problems. i was really upset and felt discouraged especially since most on this board say that the new prostetics are uncomfortable. I felt even more confused cause she said she is a survivor and a nurse so i wondered why a survivor would mislead another? i know i sound naive but i thought i could trust her but it doesnt make sense, she said that woman who dont wear a proper fitting one will be hunched over??? help

thank you for taking the time to explain this to me. i felt angry at the fitter but wasnt sure if i was justified. and btw yes, i had a bilateral mastectomy so i would theoretically need two forms. 

on another topic today at my oncologist the nurse had trouble getting blood from my good side arm and said that she could use the other side that had 4 lymph nodes removed as long as she didnt use a tourniquet- that didnt sound right to me so i said no, does anyone know if the nurse is right, i had been told no needles, bp or iv ever in that arm?

thanks so much this board has been invaluable to me 

Shippy41 -  I've been very lucky so far, almost 18 years post MX. My right upper arm is very slightly bigger than my left. I don't go crazy with precautions, but I have been vigilant about no needles or  blood pressure.

Starting an IV on my non affected arm is always a problem. I just had a PMX on my left side. They manged to start an IV in my left arm, but knew it wouldn't last and said they'd move it once I was under - foot, neck, yuck. Imagine my surprise when I woke up with an IV in my right hand. I questioned my BS. She is very conservative. I know she would never do anything that would put me in the least bit of harm. She told me that they were so careful with things being sterile that it was not really an issue now. She's in her 60's and has been a BS a long time. She told me that before they had medical oncologists, the surgical oncologists would administer chemo and they always used the arm on the side where the surgery was done. The thinking was to have the drugs go in closest to the site of the cancer. She shook her head and said they didn't even wear gloves while they were administering the chemo. I think she prefers to use the non affected arm for IVs, but will use the other arm if she has too. She didn't say anything about blood draws, which would involve a tourniquet. Maybe I'll ask her that when I see her Thursday. I always make them use my non affected arm.

The thing she warned me about and made sure was followed was that blood pressure NEVER be taken on my affected arm. She didn't want them using the arm where I just had the PMX either, even though no lymph nodes were removed. It can be used again, once I'm healed. She made sure that all of the staff knew that blood pressure was to be taken from around my ankle. I trust this woman with my life, so I believe what she says. We  have a special relationship. She saved my life once since her father brought me into this world. Believe it or not he was my mother's obstetrician.  Her father went to medical school with my uncle and our families have known each other since long before either of us were born.

Hi FLwarrior - It's been almost 18 years since my first MX. This is my experience in purchasing these items over the years. First of all, prostheses have gotten a lot lighter since I got my first one.

I think the most important this is a good/experienced fitter. This is an intimate process, you want someone you feel comfortable with. I don't know where you are going to purchase your bras and prosthesis, but I think the fitter is much more important than the place. You could ask your doctor's office for recommendations. If you're in a support group, you can get names from them. I've been to both medical supply stores and Lady Grace. I've found great fitters at both. I've been going to the same Lady Grace for the last few years and I love my fitter.

Although, in my experience,  I've found that medical supply houses  are more generous with accepting what your insurance pays (what they consider the fair and reasonable cost) and wrting off anthing over that, after you pay your percentage. Something that it seems Lady Grace doesn't do. For example - your insurance may say $300 is the maximum cost they consider reasonable for a prosthesis. The one you want costs $350. Your co pay is 30%.  A medical supply company may take the $70% of the $300, let you pay 30% of the $300 and write off the rest. Instead of making you pay 30% of the $300 plus the extra $50 above the insurance company's limit.

Check with your insurance company re what they cover, how many bras you can get, how often you can get new ones, the percent you're responsible for, what the maximum they allow for an item.  Your fitter should be able to give you the codes for specific items - i.e.bra, silicone prosthesis, foam prosthesis, etc. You'll need a prescription from your MD. The fitter can tell you how it should be written. Insurance companies and stores have different names for the same thing. For example - I wanted a mastectomy camisole. My insurance company didn't have that item listed. Given the code they were able to look it up and they called it something entirely different "post surgical something something...

You want a place that has a pretty good variety of bras and prostheses. The fitter will be able to help you pick out a style/size of bra that works best for you as well as a prosthesis that's the right size and shape. Try on a variety of both and see what fits good, looks good  and feels comfortable. You obviously want both sides to match as closely as possible. Prices vary - the most expensive one is not necessarily the best choice. Don't let a fitter steer you to a specfic one just because it costs more. Anybody  tries to do that - find a new fitter. A really good fitter will be able to alter a bra to fit you better. Mine alters the left strap, so it doesn't keep falling down. Alterations are free and she usually does them while I wait.

You don't necessarily have to buy the maximum number of bras from the store. If the price of the bra you want is more than what your insurance company allows, you may be able to find the same bra cheaper online. Online suppliers also take insurance. Once you've been fit professionally, and know your size, buy one at the store, order the rest online. If you can't find it cheaper online you can always go back to the store to buy more.

I have both soft foam and silicone forms. I wear both. For a foam form I like the Sea Shore form - it's slightly weighted. You can start with something like that and it may be all you need. You probably already know this, but you shouldn't wear a silicone prosthesis until your BS says your healed enough for the extra weight. I've read, on this discussion board, that some women never seem to find their prosthesis comfortable. I've never had a problem with mine.

I just had a PMX 5 days ago, so I am completely flat. I've seen my fitter twice this week for mastectomy camisoles and new Sea Shore forms. I'm not even sure I want or need to wear silicone forms any more, we'll see. I'm very happy with my symmetry and flatness and am planning to only wear bras and prostheses for word and dress up.

I know this is pretty long, I hope it gives you the info you're looking for. Feel free to PM me with any questions.