No reconstruction- Happy w/your decision?

shippy41

Hi I had deconstruction in June and loving it. Dressing is a bit of a challenge but i usually go flat its so much easier and more comfy. anyway....I had a check up with my cardiologist ( ever since chemo they send me to one) and she did an EKG. The Ekg came back abnormal compared to my previous one taken last year with implants. The computer interepreted the results as that I had a heart attack. I am very healthy, underweight and execise daily. The dr thinks the result was because of having no breast tissue. Has anyone had a similar experience or any thoughts about this? i am scheduled for an echo next week but a bit stressed because of this and my dad being very ill.

barbe1958

shippy, that sounds weird. Unless there is a button they press for "female" on the EKG machine and it "assumes" breasts tissue! But there are small-breasted women with hardly any breast tissue....... I've had an EKG since my doube mast and it was normal for me. Perhaps the chemo caused your heart some distress and it shows now. Don't be stressed - it'll make the testing show skewed numbers! Easy to say, I know.....

pip57

Barbe...oh they noticed.  They said things like "look who brought the girls to work today."  All in good fun.  We are a small group and very supportive of each other.  

barbe1958

Too funny Pip!! What do you sell?

pip57

I work in a large gift store that also sells Hallmark stuff.  We are all middle aged women so we identify with each other.  Most of us...

barbe1958

I worked at Eatons in the staionary department for 5 1/2 years. I LOVED it!! Best job!! I loved setting up the wrapping papers and bows for Christmas and the table decorations for Easter and all the seasons!!!!! I really miss that job and dream about it a lot.

seacretgardn

Hi ladies. I hope you don't mind me jumping in with a question. I regretfully went with immediate recon and am trying to make some peace with these TEs until the day comes that I can have them removed.



It will be a long wait, as I've just begun txs.



I'm wondering if anyone else made the decision to not progress with the implants and just have the TEs removed and how long the recovery was?



Thank you for listening.

barbe1958

seacretgarden, there are many ladies on these boards who have been "deconstructed". If you do a search for that word (at the top of the home page) you will find posts that may be of interest to you. You have had to make TWO brave choices and I wish you only the best!

pip57

Christmas is the best time of year in retail.  We used to own a Cut-Your-Own Christmas Tree farm.  I ran the gift shop/hot chocolate cabin.  It was heated only by a pot belly stove in the middle.  Loved it.

Secretgardn:  I hope you are happy with whatever decision you make.  Just know that many of us are VERY happy to be without.  

seacretgardn

Thank you Barb and Pip.



Unfortunately for me, I had not yet found this wonderful resource, and kinda felt talked into the recon, all my arguments were against, I didn't listen to my own voice, boy is that always the wrong choice.



Thank you for your support.

Momine

It felt like that to me to, as if I was being talked into recon. In a way I was lucky that I did not qualify for immediate recon. The imposed wait has given me time to think and regroup.

You should also be able to consult with the plastic surgeon about how long and how successful recovery is likely to be. My guess would be that if you decide to deconstruct, the sooner the better, to avoid damage to muscles and skin, but what do I know, I don't even play a doc on TV .

Like some of the other ladies here, I am very happy and comfortable with my decision to leave well enough alone, for now anyway. And if one day I change my mind, or surgical techniques improve massively or whatever, then I can always reconstruct at a later date. 

Starak

Pip57:  The only human being outside of myself (including even Her Yorkinesses who think they are human) that has seen me with foobs was the fitter for 5 minutes in the fitting room.  I never even stepped foot out of the fitting room.

Almost ironic that for most, they wonder how people will react if they go flat. I have gone flat for so long and have everyone so "trained", that I wonder how people would react if I suddenly out of the blue decided to have a "bring the girls to work day", that is if I had any to bring.  I actually think it is hysterical that I am so confident flat and would be almost afraid to show up with girls.

Not to say that I am seriously thinking about getting "girls" but I really am curious about the experience of women who sometimes wear girls in public and sometimes they don't.  I would almost think that to go back and forth would be the most difficult of all or do you find that it is no more unusual or a big deal than showing up with a new haircut or color?

Barbara

seacretgardn

Momine I would have them out tomorrow, but unfortunately am looking at 5 months of treatment then rads. Other than for emergent reasons, they won't consider surgery during treatment.



I was under the very naive assumption prior to my bmx that 1. I most likely would not need chemo and 2. I would not have TEs placed should they find more extensive involvement. Of course that was not in writing.



Consequence of having meetings w bs and ps too close, not seeking second opinions, and racing ahead from fear of already letting this go longer than it should have.



Needless to say I struggle every day with this.

Momine

Seacretgardn, I am sorry to hear that you struggle so much with this. That time between DX and starting treatment was like a whirlwind of anxiety, emotion and rushing around for me, and I imagine most people go through that. If my surgery had happened sooner (I had chemo before surgery as well as after) and I had been a candidate, I would most likely be in your shoes. Seemed like a pretty good 2-for-1 deal and at the time, the idea of being boobless was quite strange to me. After 2 months of chemo and some decent sleep, I looked at the whole thing quite differently and by that time, it was in any event clear that I was not a candidate.

My advice would be to shrug it off for now. What is done is done, and right now the most important thing is to get through your treatment and come out on the other side. You will deal with the implant question when the time comes. 

CharB22

Thank you all for these great comments. I'm so happy to hear that I'm not alone. I was just diagnosed on 12/1 and had a lumpectomy and SNB on 12/9. It all happened so fast - I didn't know that I could get an MX at that time - I could have, right?

My BS wants me to have the BRCA tests and I already told him that if it comes back positive, I want "the girls" removed. He said, "well, you're young." Yeah...I am 47 and I have 2 kids and I want to grow old and see them married and have grandchildren. I don't care about boobs. They're a pain in the butt anyway...I hate bras. I'm a C and they're annoying. I hate button-up shirts because they always gap in the middle.

 I don't want all the surgeries. I'm a big baby...the fewer surgeries, the better.

River_Rat

Seacretgardn, I'm sorry you've got so much to deal with now.  I hope that during the following months the TE's don't continue to bother you so much and that when your treatment is over you can take the time to make the decision as to what is right for you.

Barbara (Starak), you were wondering about those who sometimes wears the girls and sometimes doesn't - well I'm one of those people.  I don't usually wear forms but once in a while if I want to wear something that I just can't wear without them then I just wear the darned things.  This doesn't happen very often.  Before surgery I was a 34D but when I bought my first forms I went with a B.  I wore those for a year or so - didn't even think of the possibility of not wearing any back then.  About a year later I went with forms that equaled out to an A.  Another year later and I was down to a AA and quit wearing them most of the time.  So when I wear forms it's just pretty much to fill in the concavity and not to look at all busty.  I also sewed pockets into my swimsuits and put just enough shower scrunchy in there to acheive the same thing. 

For me transitioning to nothing has been a gradual process.  The truth is if I were flatter - I've got the little dog ears in the center and fullness along the bottom - I would never, ever wear the forms.  I don't want to have surgery to remove those areas though because I have pleasant breast sensations there and I'd like to hang on to that.   

barbe1958

Char, some insurances will still allow you get get a mast. Would you do a double though to be able to go flat? If you come back BCRA+ I think you're allowed to get a double. I live in Canada and we don't have to worry about $$$$$$ at least during this stressful enough time!!

Momine

I am 47 also, and besides it is my bleeping decision.

Starak

River_Rat - That was really helpful.  Thank you!!

Barbara

Starak

Char, Double check for sure, but it is my understanding that here in the US, if an insurance company, including medicare, covers mastectomy they are required by law to cover all stages of reconstruction on the same basis.  Again it is my understanding that prophylactic removal to achieve symmetry as well as my dog ear removal fall under "recon" as defined in the law.  Some states have additional laws in this regard.  I think there is some provision for prosthesis in there as well.  You would have to get an official legal interpretation for exact details and then mesh that with the terms of any insurance you may have, in order to weigh all of your options. 

In my case, I had lots of options but when they said I could avoid rads with an MX, I couldn't agree fast enough and from there to the BMX was a no brainer.

Barbara

Starak

Here is further info on this issue from the US Dept. of Labor website.

http://www.dol.gov/ebsa/publications/whcra.html

As I mentioned, many states also have their own laws in this regard, so you would additionally need to research that aspect. You will find a link at the bottom of the page.

Barbara

farmerlucy

Ladies - I will be having a PBM in early 2012. I still need to meet with PS, but I am seriously considering no reconstruction. I guess I am terrified by 'the first look".  How was it for you? How did your family react to the new you? Any tips for helping the family adjust? I am a very down to earth person, I and think I would get used to it quickly.

This is not something I want to do ( the PBM), but feel I must do. Sometimes I am worried I am overeacting, but then I go back over the decision tree and the answer is always the same.

Has anyone ever been so unhappy with the flat look, they decided to go ahead with reconstruction?

These discussion boards are the lifeline I need. Thank you all!

pip57

I too would be interested in hearing from those who may have decided that being flat was not for them.  For me, it would be totally different if I one breast left.  I did for a while and it was not pleasant.  

Momine

Farmerlucy, I thought it would be really bad to see myself boobless. My kid is 19 and I am still upset about how my stomach looks from the pregnancy, so I am not exactly laid back about these things. But it really wasn't too bad, and once the various bandages came off and I felt better, I felt almost happy about the change. 

My dh has been totally fine about it and sees no reason for me to reconstruct. 

barbe1958

Lucy, my literal first look was in the hospital. I had a white bandage about an inch wide right across my chest! At that point I couldn't see where the drains were so it all looked so clean and neat. I was very impressed. When you first have surgery, you will be too sensitve to wear anything skin tight as your wound is aggravated by itchy or stiff fabric so you tend to wear loose clothing like hoodies that also hold the drains. So it's a bit before you wear anything too revealing and by that time you're used to it. I had my DH massage cream into the area every night to keep circulation going and to "scratch" the itch of the healing nerves. He got used to it way before me.

Starak

Farmerlucydaisy - I see you are right here in my part of the world.  I live in far west OKC.  If you go to the

Oklahoma girls (or guys) out there? thread, there is a lady somewhere up in the Tulsa metro area who changed her mind and went for recon.  She seems pretty happy now.  I made the no recon decision early on and have never once looked back.  If you search around, you will find every possible variation from totally happy to totally not.  Same for those who went for recon, from happy to despair and every nuance inbetween.

My sister-in-law, who is a very down to earth woman, came to help me in the initial week after the surgery.  She has something of a farm background.  I have had a lot of animals and seen alot of surgeries over the years including a full length complete bilateral mastectomy on one of my dogs that went from neck to stern.  I was prepared that I might never want to look in a mirror again but neither one of us thought it was that bad at all. 

Barbara

seacretgardn

River -rat and Momine thank you.



I plan next week, a "fill" week, to have as much saline removed as they will allow. Hopefully, this will allow the spasms in my muscles to relax a bit, and not be as drastic a change when the time comes to have them removed.



I am single, oldest daughter does live with me, but not having gone ahead with recon would have allowed me to regain some strength, exercise, and sleep on my stomach, probably one of my unhappiest discoveries!



I will pray for patience!

SafetyBoater1

Hi Marlee,

My mastectomy is scheduled in two weeks and I've decided not to reconstruct.   I didn't want an implant under my pec muscle -- I use that muscle for whitewater kayaking, rock climbing, and bowhunting,  and I don't want anything to interfere with it!   I don't have enough tummy to use for a reconstruction, and certainly don't want any other muscles moved around.    I felt pretty strongly about this right from the beginning and was a little baffled by how many doctors and friends were surprised by my choice.   I just want to get my body functional again as quickly as possible.  I figure my missing A-cup won't be too noticible, and I'll get a prosthesis for "dressing up" occasions! 

Erica3681

Hi farmerlucydaisy,

I just want to add that you don't have to go with the flat look just because you choose not to have reconstruction. I'm someone who feels totally comfortable going flat at home. I don't mind how I look and never considered myself "disfigured" or "mutilated," just flat with two neat incisions (after five years almost invisible).

However, I liked my shape with breasts and still like to "wear" that shape when out in public. I have both lightweight silicone breast forms and foam forms. For daily wear, I tend to prefer the foam forms in a pocketed camisole. They create a natural shape but are totally comfortable. When I go out in the evening, though, I'm more likely to wear silicone. They feel great to the touch and are also very comfortable. 

Although my friends and family are all aware that I had a bilateral mastectomy without reconstruction, the rest of the world isn't. I've considered going form-free but so far it doesn't feel right for me. But not having reconstruction was definitely the right choice for me and I haven't regretted it. If you haven't seen photos of women after mastectomy surgery, you might want to check out the Photographs section of BreastFree.org.

Barbara

 

pip57

I wish recon wasn't pushed on so many women.  Or just assumed that it is part of the whole proceedure of a mast.  How many breast surgeons who are removing the breast are the same ones doing the recon.  Of course they are going to 'recommend' it.