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double mastectomy 2 weeks ago

kms3566
Posts: 57
Joined: Jan 2010

Hello, I am not really sure what to post. This entire process as hit me hard. Within 2 weeks of my mammogram I had a double mastectomy, actually 2 weeks to the day, which is today. Yesterday I had my drain tubes and all 75 staples removed and physically feeling tons better. I have been told that only the centinal node was positive and all others were clear, so no radiation only chemo. I have my 1st appt with the chemo dr feb 23. Still I am not sure what my feelings are. I want to move forward ASAP with chemo and reconstruction. There is only one dr in my area with recon that i was told about, but i am wanting to check the surrounding areas, which are really close ( anyone out there in the Greensboro, NC area)! I am just so scared and not sure what to do next. I guess most for this is my way to unload and really could benefit from all the knowledge of wonderful ladies out there that I have been reading their posts!

VickiSam's picture
VickiSam
Posts: 8292
Joined: Aug 2009

I did things a bit backwards .. lumpectomy first, chemo 2nd and bi-lateral mastectomy on 1/12/10 - a day before my birthday. My adventure started on 8/14/09 - when my general surgeon told my husband and I, that I had DCIS breast cancer, along with being Her2 positive.

Anyone with Breast cancer will have their world turned upside down in a matter of mintues. First there is denial, then I went into research frenzy - now 7 months later - all I can say to any women or man out there newly diagnosised -- read, get involved and post .. here on the AMERICAN CANCER site .. no other site active and running will provide you with detailed information, options or love.

Call a few of the larger Hospital's in Greensboro, NC and inquire about their breast cancer research, doctors and clinical trials.

Yes, it is frustrating and time consuming, but this is our body, our cancer and our FIGHT.

Good Luck and God Bless.

Vicki Sam

Tinabug's picture
Tinabug
Posts: 158
Joined: Dec 2009

Hi, I am not in your area, but just want you to know you are not alone in this battle!!! It is very normal to be scared...breast cancer is frightening!!! The ladies on this site are a tremendous help & wealth of knowledge & support!!! Like you, I had a bilateral mastectomy. I do not have to have radiation, but tomorrow will be my 2nd round of chemo(taxtoere/cytoxan.) One of the most important things I did, was find an amazing group of doctors(surgeon, plastic surgeon, & oncologist.) In the beginning, they were all at the same hospital. However, after my 1st appt with my original oncologist, I decided I didn't like him. I changed oncologists which meant I changed hospitals...I am thrilled with my decision. My plastic surgeon is one of the best in the southeast...he specializes in breast reconstruction & has been to Washington to fight for the rights of women with breast cancer!!! His name is Michael Beckenstein...you can google him & his website will provide tons of info about reconstruction. I had expanders inserted at the time of my mastectomy, but will not get my implants until after chemo. I am stage 1 & my 1st onco told me I didn't have to have chemo, because my Oncotype was 15. My new onco disagreed with him, which is why I am having chemo.

I am fairly new to this site, but will be glad to answer any questions I can & help you in anyway possible. Breast cancer is the toughest journey of my life, but I just keep telling myself I'm tougher!!!! Sometimes it seems as the ladies on this site are psychics...I will be thinking something,log on & someone has already asked the question.

Hugs,
Tina

kms3566
Posts: 57
Joined: Jan 2010

HI Tina, Thanks a bunch for the info and support. I am going to check Michael Beckenstein's web site today along with others in this area. I don't know how soon I can start the reconstruction process but I hope soon. You're right about the toughest journey of our lives. I too keep telling myself I am tougher also, but I am still so new to this and not so sure at times. I am so greatful for this site! I my not post often, but believe me I am on here most days reading, educating myself on what to expect, and gaining some courage from all the awesome sisters in pink!

Sharon40's picture
Sharon40
Posts: 93
Joined: Dec 2009

Hi Greensboro. I'm not too far away! My story (short version): Chemo first, lumpectomy in Dec (didn't get clear margins), 2nd lumpectomy (still not clear margins), mastectomy in late January. I start radiation next week and then I am going on a cruise!! Because I have to have radiation, I can not do reconstruction for 8 months to a year. By then, who knows! Hang in there!

anjelic00's picture
anjelic00
Posts: 7
Joined: Feb 2010

I also was dx with Left breast cancer on Dec 3 2009 and had a bilateral Mastectomy and was supposed to get expanders at the same time of my surgery. When I woke up and was told they could not do the reconstruction cuzz the cancer had spread to two lymphnodes I thought it was all a dream. Today I had my first round of chemo and was told I need radiation in about 2 months. All this would last a year or more. I am at lost with all this also and going thru all the emotions you are as well. I was also told I will lose my hair. I just registerd to this sight today and was just looking for some info on wigs and false boobs. But when I seen your post I thought of myself. I dont know anyone going thru what I am and I'm happy to have found you and the other women here. :)

kms3566
Posts: 57
Joined: Jan 2010

Thanks to all of you! Best of luck to you, Anjelic00 with the chemo, I will be right behind you. Of the lymph nodes they took out they said all were clear except one so I will not have to have rad. My 1st visit w/ the onc is a week from today. I am still very swollen and sore from the surgery. I can not sleep in my bed so I have been in the recliner for almost 3 weeks, is this normal? I really thought it would be better by now. I am terrified on losing my hair, and I know that is incredibly vein but along with losing the boobs, b cup or not, I am trying to stay positive but I have not been to work since my surgery and I work in a very male oriented environment. I used to joke to my husband about wanting a boob job, just didn't think this was how I would get it. How soon should I look into wigs, prosthetic boobs?

One of my best friends from NY was here for a long weekend (trip was scheduled before I was diagnosed) Just got back from taking them to the airport, first time driving, and going to spend the rest of the day researching plastic surgeons.

BethInAz's picture
BethInAz
Posts: 203
Joined: Jan 2010

I had my double mastectomy in October, just finished 4 rounds of chemo a week ago. I was told that you should heal for about 6 weeks before wearing weighted prosthetics but my surgeon said I healed well enough that I could begin wearing them at about 4 weeks. Your surgeon will be the best one to consult on this. In the meantime, you can get from American Cancer Society site a soft form to tuck into a mastectomy bra. I went to a mastectomy fitter who had all sorts of items such as camisoles, soft forms, bras, etc. to use prior to getting the real prosthetics. My prosthetics/bra work well. I ended up going down a cup size and everybody comments that I look as though I've lost weight! Can't beat that! I went to a prosthetic fitter who also sold wigs (their specialty was working with people with medical hair loss). I was told not to go cheap on the wig and it was great advice. I spent $325 on my wig - a synthetic monofilament wig - happened to be a Tony of Beverly wig. I've had people tell me it looks so natural they couldn't even tell it was a wig. I can comfortably wear it all day with only an infrequent itch. At home, I wear my "Fight Like a Girl" ball cap and I ALWAYS wear makeup! It's one way that I still feel like a girl - with no boobs and no hair. Thank goodness there are people out there who are making items that make us feel feminine again. Blessings on your journey. It's a hard road but I've found there are a lot of good things that come out of this journey. You'll find good things, too! Beth

ms_independent's picture
ms_independent
Posts: 216
Joined: Nov 2009

Hi kms,

I was like you are regarding the pain. I think it was 4 to 5 weeks before I could manage getting in and out of the bed. I got a big wedge pillow to elevate my upper body in bed. The only problem was it hurt too much to get in and out of the bed. My husband would cradle me (supporting my upper body and under my knees so, I didn't need to use my stomach and chest muscles)and lower me down and pick me up. I had to go back in for additional surgery at 2 weeks so, that delayed me a bit. If you are like I was, when it gets better---it does it quickly. Here's hoping that day arrives soon!

Hang in there, El

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

Just a note on boob and wigs. Check with your ins about help in paying for these items. My ins. paid $300 toward my wig (cranial prothesis) and $300 for my boob and will buy a new boob annually and paid for 4 mastecomy bras and will buy 4 new ones annually. But you have to go to ins certified fitters. And you really want to anyway.

My surgeon said wait 6 weeks. I did and the boob is terrific. Had my wig before chemo started plus some soft type head covers. The surgeon writes a Rx for the boob and my onc wrote one for the "cranial prothesis" as they call it. You have to have the Rx for the ins. company.

Good luck with all this and just know that someday it will all end!

Hugs, Judy :-)

kms3566
Posts: 57
Joined: Jan 2010

I did, or actually had my husband go and get me the camisoles for after surgery, did not have time to do this on my own before hand (not a happy camper but he did it anyway). He got the ones that hold the drains and tubes. He also got me 2 different sizes of the "pillow" type boobs for now. It is a certified shop and they also have wigs, so as of right now I have not paid for anything and they filed with ins, no RX yet. I Hope to try the prosthetic boobs before I can start the reconstruction process. Since many of you have mentioned going before chemo for the wigs, I think I will try that next week. Thanks for all the info. I feel most of my info seems to come from this site as opposed to my dr! Something wrong with that picture??

Thanks again!

anjelic00's picture
anjelic00
Posts: 7
Joined: Feb 2010

Even tho I started chemo yesterday, I been having a hard time with going to get my hair cut short but know tomorrow I will need to do this. Good idea, I need to look into my insurance to help me with the prosthetic boobs also. As I will need to wait for reconstruciton until all my treatment is done which is will be over a year. I worry about the summer time, I have been wearing a sweater and in AZ its not fun at all. Tomorrow I'm thinking about just a light scarf around my neck when I'm out and about. One thing I noticed the numbeness went away in my chest but it feels so tight. Thanks everyone!

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Sending you lots of prayers! This site is the best for information.

Good luck!

Debby

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