Reconstruction questions

Westcoastgirl · 02-17-2009, 03:40 PM

Hi ladies,
I am hoping for some guidance. I am 57, tall and slim, with little body fat. I am almost 5 weeks out from a double mastectomy and will soon begin 6 months of chemo, followed by a year of Herceptin, and who knows how long of aromatase inhibitors. Both the surgeon and plastic surgeon did not want me to do immediate reconstruction but the surgeon tried to save as much skin as possible. There is more skin on the uninvolved side however. The surgeon wants me to wait until all my treatments are complete but that feels like a very long time. The plastic surgeon told me to come back after the mastectomies had healed and if there was enough skin he could do a silicone implant, without the expanders. I would just like to look a little normal, "a" cup would be fine, do not care about going back to my "c" cup. I would need to create two breast mounds and am quite slim. I don't think I want to cut any other part of my body as I need all my muscle so am leaning towards silicone. I would love to hear that there are ladies out there happy with their results and appreciate words of wisdom, suggestions.... Thanks, Carolyn

Laurel · 02-17-2009, 08:34 PM

Westcoastgirl,

Welcome to our little band of merry pranksters! Sorry you got the BC invite, but we are glad to have you just the same!

Now, as for my reconstruction, I am very happy thus far with my new girls. I had IDS/DCIS in my left breast, no nodal involvement, 7mm invasive component, stage 1b which is what you are from the sound of things. I did 8 rounds of dose dense ACTH and then had bilat mastectomies with immediate reconstruction beginning with tissue expanders. The expanders are yucky, hard and just plain uncomfortable. I had them exchanged for silicone 2 weeks ago and I am delighted. They are soft and look like real ladies! After those awful expanders, anything would be an improvement!

In a few months I will have nipples made and then later I'll have the areola tattoed on.

May I suggest a site where recon issues are discussed at length? Try www.breastcancer.org. One of their disscussion boards is devoted to reconstruction threads. After you have been on the site a bit and have been participating you can look up a member called TimTam. You may PM her asking to enter her site called the Picture Forum. This is where members post their photos of their breast reconstruction. TimTam will check you out to make certain that you are not a perv by observing your posts on the boards before she emails an invitation to enter the Picture Forum. I am trying to muster the nerve to post my photos there. We'll see if I am brave enough. Trust me, my face won't be with the "girls!" I do feel that I was reassured by all the courageous women who were kind enough to share their reconstruction photos with me, so I should pass it on so to speak to the next woman who is wondering what she will look like after her breasts are gone.

I wish I could have retained my girls, however I believe in playing the cards you are dealt, so I am playing my hand. That hand has me learning to love my new girls, and guess what? I do! My husband likes them, too! Recon is a long process, but worth it.

Breastcancer.org also has a Her-2 contingent posting under their own group on the message boards so stop by there as well.

Take care of yourself. You are in such a scary time. Exhausting and frightening. These are such a great group of folks. You will be less afraid in the mist of all these fellow sojouners on this BC journey!

Westcoastgirl · 02-17-2009, 09:03 PM

Wow, thanks Laurel,
We do sound a lot alike so it is more than helpful to hear from you. I am starting a file for reconstruction and once I am past knowing what I am dealing with as far as treatment, I truly want to figure reconstruction out as it would be nice to have breasts again, just to feel normal and feminine. A little light at the end of a dark tunnel...but now that does not sound right. I know there will be light at the end of the tunnel. New breasts would be icing. Thanks!

harrie · 02-17-2009, 11:45 PM

My very good friend who is 44 yrs old, in excellent shape, very active and athletic, had a dbl mastectomy 2008 and ended up with expanders and silicone implants. She looks as good as she did prior to her mastectomy and she loves her reconstruction.

hutchibk · 02-18-2009, 12:06 AM

I would venture to say that you should not have to wait until done with Herceptin to have recon... ask your onc, but I believe they would sign you off for surgery when you are on Herceptin. I just had my implant replaced last week and I have been on Herceptin (again) for the last 4 months (and will be indefinitely) with absolutely no complications. Also, I had an expander for the 6 months while in chemo, and then had the implant put in. Just food for thought. Best of luck!

Westcoastgirl · 02-18-2009, 05:14 PM

Hi Brenda,

Are you happy with your implant? Laurel certainly is, so this is all so very encouraging. I did talk to the Onc today and he said just as you did that I could begin the process after the 6 months of chemo, when I am just on Herceptin. That is good news and something to look forward to. There is a slight complication however as it seems the drs do not agree with how many nodes they took. I will have to see the Radiation Onc to determine whether or not I will have to do radiation....sigh. Oh well, I begin my treatment on Monday so finally I will be on the road. If only the mastectomy could have been all that was required...another sigh. Carolyn

Laurel · 02-18-2009, 07:29 PM

Westcoastgirl,

Chemo is not a bowl of cherries; that's for certain. I was given an infusion of a drug called Aloxi. It is a long-acting Zofran which really kept the nausea at bay. I also took Emend and Decadron orally for 3 days after the chemo infusion. The Emend works on the brain's "vomit center", basically disrupting the pathway to that area. I'm not certain I could have tossed my cookies even if I had felt like it! Good stuff!

Let us know how it goes for you. You will be in our thoughts and prayers, but then you already know that, don't you?

Jean · 02-18-2009, 07:59 PM

Hi Carolyn,
I can't offer any help as far as you're recon surgery.
But, I do want to wish you all the best as you begin
you're treatments.

As Laurel stated chemo is not a bowl of cherries.
But, the Emend is a wonderful med. What ever your dr. does give you make sure you take it...even if you feel great. That was a mistake I made I didn't think I needed to continue to take my anti nausea med since I was feeling good. Once the nausea got a hold it was difficult getting back on course. So take your meds even if you feel great.

Make sure you eat small high protein meals.
Drink fluids (water) to hydrate yourself after treatment to flush you're sytem, this is very important.

Also, buy a few new toothbrushes and change you're toothbrush at least once per month, to avoid any mouth infections or sores. Since you're immune system will be lowered.

Yogurt is a great food and I found I did not get any mouth sores...the natural bacteria was helpful.

The treatment rooms tend to be cool, so wear layers of clothing, a sweat suit is perfect, as it is comfy and warm.
Take some snacks with you, apple, crackers, in case the treatment center does not have any snacks to offer.
Most center do, but maybe you might wish to take something you especially enjoy.

Please know we are here for you ....wishing you all the best.

Kindest Regards,
jean

Westcoastgirl · 02-18-2009, 08:06 PM

Thanks Laurel and Jean, everyone...,
I cannot say how happy I am to have found my way here. My husband has been on the site as well to read the caregivers corner and it has helped him. Thanks for the tips re chemo. I have dropped the prescription off at the pharmacy and will get it tomorrow to be ready for Monday. Not sure what they have given me as there is so much information coming my way again. I will follow your advise re not skipping any of the meds they give me to help, will wear layers, take snacks. I read the signatures the two of you have and see I can shorten mine up, use some of the abbreviations. I am truly overwhelmed with how people have reached out to me, makes this an easier road to walk. Cheers!!