Choosing Not to Reconstruct

mamalu13

Hello

I just had a mastectomy on Dec 13 and I am having a terrible time, everything has gone wrong.

It all happened so fast that I let the doctors talk me into tissue expanders and I hate them. My doctor keeps telling me the same thing , that I am too young and I will have issues later infact he made me see the plastic doctor also. I wish I had stood my ground, but here I am having to have another surgery to take this thing out. Do you know of anyone who has taken them out. I am wondering what the after affects are.

mamalu13

I am so glad to have read your entry. I had my mastectomy almost 4 weeks ago and also have a tissue expander. I just want to get this thing out of me. I cant see putting myself through anymore surgeries other than to get it out. Thank God I am cancer free also. I just want to concentrate on tryint to put the peices back together and getting through this severe depression I am going through. Everytime I talk to my doctors about not following through with the recon they always try and talk me out of it. I dont understand why, they tell me I am too young and will have issues later. But guess what I already have issues cause of all the pain this darn thing has caused, I just want to heal and move on. When you had them taken out , what was your recovery time, Was it as painful as the initial placement of them and did you need drains again. You see I dont do well with pain meds and thats the only thing I am really afraid of.

Starak

Mamalu: I am going to send you a Private Message.

Sending hugs your way.  Please know you are not at all alone in this.

Barbara

mamalu13

Thank you Barbara

I will look for your message

mary625

I had my appointment yesterday.  BS did question my decision and said that she would insist that I visit with a prosthesis fitter before I made up my mind.  I told her I had already visited one at Nordstroms, but she recommended some other shop.  She went over mostly the "cons" of not having the surgery and that it would be more convenient to have the reconstructed breasts.  She seemed to feel that the prostheses are too uncomfrotable.  She said I was young.  I finally started crying and said that I just wanted this whole situation to be over with and not enter into any more commitments to surgery.  I did not agree to the recon.  She said all along she would do what I wanted but just wanted me to be "informed."

I am not going to change my mind.  I don't get how two additional hours of surgery for the TEs, 6-12 months of having the TEs, and then more surgeries is going to be more convenient for me.  I am sure I can adjust to the foobs.  If I can't, well then I have the option of going foobless at least around the house.   I am struggling as it is to keep up with all of the medical appointments along with work and the rest of life.  I struggle timewise with work and rest of life as it is even without BC treatment.  If I really wanted the recon, I guess I would do it, but to add stress for it as I currently feel about it---No.  Oh, and I'm not visiting the other shop either.  They have the same Amenona (sp?) forms that Nordstroms has.

Momine

Mary, sorry your surgeon is making your life difficult. It would be nice if doctors could try to be a bit more responsive and helpful.

I completely get your reasoning, since mine was similar. Besides, IF you find a year or two down the road that the foobs are driving you nuts, then nothing stops you from having recon at that point.

My foobs are the soft, light, microbead kind. I ordered them online at TLC. Just be warned that they are on the big side. I ordered size 5, because that is what the chart said would fit a 36B bra. But a 4 or even a 3 would probably have been fine. I also ordered several bras, but now that I see how they are made, you can obviously quite easily make a pocket for the foob in most regular bras, as long as the bra has decent coverage. When I am home I take the stuff off. So far, it is working out just fine and I feel no less feminine or like myself.

Best of luck, stick to your guns and do what is right for you. 

barbe1958

Or...you can enjoy going braless like I have for the past 3+ years!!! In the beginning, I was still pulling up my `bra` strap that I was so used to tugging up. Now I wear pretty, soft camis and feel very decadent to with the sexy fabric against my bare skin....

LuvRVing

Ladies - I had my tissue expanders removed in early November at the insistence of my radiation oncologist.  Apparently they were going to be in the way of my radiation treatments, covering my heart.  The surgery for removal was very, very easy.  It took a little over an hour, I went to recovery and I was out of the hospital an hour later.  I never even needed a Tylenol because the nerves had already been severed from my BMX.  So if you are thinking about it, keep in mind that it's not bad at all.

I am planning on reconstruction in late summer, but I will have DIEP, which is what I wanted to begin with.  I was rushed into TE-based reconstruction when I had my BMX in April.  I wish I had taken time for a second opinion but my cancer was screamingly fast growing and I was afraid to take another minute more than necessary.  I was referred to the PS by my BS because they often do surgery in tandem which does reduce the length of surgery.  He told me I didn't qualify for DIEP, but a later opinion by a PS at Brigham&Women's in Boston told me I am a candidate. 

I admire those of you who have chosen not to reconstruct.  So many women are not comfortable in their own skin, regardless of how they look. 

crystalphm

One thing we all have to remember is *if* we want reconstruction, we can have that in a year or 2. Check with health insurance how long you have to decide.

I loved the one thought that breast cancer seems to get all the focus on reconstruction and we forget we are curing a deadly disease. The focus needs to be on :Is the cancer gone? It amazes me how they press women into things they do not want.

Barbe, I have learned a 4 letter word since my mastectomy : silk :-) I wear a silk cami every day, Winter Silks (online) has great sales if you watch. And if anyone knows a better source, please tell me! Silk is decadent and delicious, and you can machine wash and line dry these.... Please tell me your cami's that feel so great....

Erica3681

mary625,

I am really sorry that your surgeon is so rigid about the reconstruction question. It used to be that doctors never recommended reconstruction to their patients. Now the pendulum has swung the other way and surgeons often present reconstruction as the only option after mastectomy.

I've said this before on other threads, but it really sounds as if your surgeon is projecting her own feelings onto you. Maybe it's she who couldn't imagine living without reconstructed breasts if she needed a mastectomy. I'm especially upset by her comment about prostheses (breast forms) being "too uncomfortable." I wonder where she got her information, and when. There are many more options for breast forms today than in the past but she may not know about them. And Nordstrom is considered by many to be an excellent place for finding forms. Some of the smaller shops have older, more old-fashioned fitters, who still may be recommending the less-comfortable bras and forms (though some fitters in smaller shops are great).

It makes me sad that your surgeon failed to support your wishes. I hope that once you've had your mastectomy without reconstruction, if you do feel good about your decision, you'll try to educate your her, perhaps by recommending she look at this forum and at BreastFree.org. The breast surgeons at the hospital (Beth Israel Deaconess in Boston) where I was treated now refer their patients facing mastectomies to BreastFree.org in addition to giving them a PS referral. That way they can see the positives of both reconstruction and non-reconstruction.

crystalphm,

I love WinterSilk tees! They were a lifesaver for me after my bilateral mastectomy, when I developed nerve sensitivity for a few weeks. The silk glides over the skin and made wearing clothing much more bearable until the sensitivity went away. I even recommend silk and satin tees on BreastFree.org for just this reason.

Barbara

Momine

Yes, Barbe, true enough. I agree about silk, it is the nicest ever.

Mom2JJ

I had a BMX three weeks ago today and was scheduled for an immediate DIEP reconstruction, which the PS did not do because one of my nodes was positive. BS removed four nodes. PS inserted tissue expanders to keep some shape while I go through radiation (a certainty) and chemo if needed (still waiting for final report). Although I am 53 and not a super athlete, I do work out regularly with a trainer and lift heavy weights. The tissue expanders are now just moderately uncomfortable, but I am concerned about exercise restrictions if I do reconstruct with a DIEP. I understand that no muscle will be taken and that the belly fat will be placed on top of my pectoral muscles (unlike implants and tissue expanders, which sit underneath those muscles). Does anyone have any information on the potential exercise/activity restrictions if one chooses reconstruction? If I learned that I would face significant permanent physical restrictions, I probably would not reconstruct, even though for me, not having my breasts would be psychologically difficult.