Bad reconstruction, scared

shannday

Hi, I am new to this. I was diagnosed last Halloween and since then my life has been a total whirlwind. I was immediately taken to surgery, well it felt immediate, it was 12/4 for a bilateral mastectomy with reconstruction. I started chemo in January, radiation the same week chemo finished, and am supposed to start taking Tamoxifen. Since my reconstruction was not good I just last Thursday had a revision, which very sadly is worse than the original reconstruction. I am so scared and sad I don't know what to do. Given that I am already so emotional I am petrified to start taking the Tamoxifen, feeling like it will only make matters harder to deal with. I am 42 and have 2 teens at home. Does anyone have any suggestions??? My husband is very supportive, but having a teen girl and boy i'm afraid we're all going to make him crazy.

Pixie Dust

First Thing I Would Do

Shannday, I had a BMX in Jan, started chemo in Feb and ended in May. I had no choice but to have a BMX. I had already made up my mind what I was going to do before my husband and daughter told me what they wanted me to do. And that was no reconstruction surgery. Just for the same reason that you are going through. Dealing with cancer is enough and when you have reconstruction surgery and then keep having more trouble with it you have double trouble. This is why I did not have it done, Yes you do hear of some success with reconstruction surgery but I hear and I know alot of people who wish they had never had it done. Since you have a supportive husband, I would not wait no longer and have them removed and stay boobless. You will be much happier since you have only had trouble with them. I am happy without them and so is my family. You need to start on your Tamoxifen. This is to help your cancer from returning back and with you having 2 teens living at home I am sure you want to see them in their later years so you need to start on this. If this med does not work out for you their are others you can try. the best advice I can give you by the way you sound and the situtation you are in and you have a supportive husband is hurry up and get rid of what you got and go free and all of you will be happy again.  Best of luck to you and your family. I am so happy that I did not have this done for the same reason that you are going through.  (((HUGS)))  Pixie

Clementine_P

I would consider

speaking with your doctor to ask if they can give you something for the sadness and anxiety you are feeling.  Just something to help you cope in the short term.  As for Tamoxifen, in my opinion, you should go for it.  I have now been on it for 4+ years and the only side effects that I experienced was some swelling and stiffness in my joints which resolved over a few weeks' time.  I think most people feel minimal to no side effects from Tamoxifen. 

I'm sorry you had a bad reconstruction and I hope that over time a solution will come and that it will cause you as little turmoil as possible. 

Best,

Clementine

Lilly9

New also

I just joined today as well.   I am really sorry to hear about your scarring.   My sister had a bilateral as well.  Ended up with an expander problem that caused her to have 3 additional surgeries on one side.  She now has her permanent implants.   It's been a year and a half and she feels much better about how things look.  The scars have laid down and are diminishing with time.  

 

After my implant surgery my doctor recommended a product called scar guard.   I used it faithfully and I was thrilled with the results.  So much so that I gave the rest of it to my son who was left with a bad scar after an accident.  His scar is a couple of years old but it has made a big change in the looks of it.  You may want to talk to your Dr about this.

button2

Be patient

You are in the middle of difficult treatment and you just had surgery. Of course you feel miserable. I did too a year ago. Things will get better. I decided not to have reconstruction surgery. I just feel that since reconstructed breasts have no feeling, I might as well just put a silicone insert in my bra and take it out whenever I want. Talk to your surgeon and see what can be done in your situation. Maybe you can put off further surgery for the time being to allow yourself to heal. Sometimes I think women get reconstruction just because they are expected to. Beating the cancer is far more important right now. About Tamoxifen, I hated it at first as it caused so many hot flashes and I believe weight gain (could have been the chemo though) Now that I have been on it almost two years, things have settled down. I even have started getting my period again. I believe strongly in using all the meds at our disposal to fight the beast. I just eat a healthy diet and exercise every day and my weight went back down. I'm so glad I stuck with it and hope to be able to take it for the full 10 years. It's my security blanket. I have a teen at home too and when I was diagnosed I had a son leaving home. In fact, I was lying on a hospital bed getting a biopsy when I received the call he got into his dream school. Finding out I had breast cancer and my son's dreams coming true on the same day! So it was all much harder on my 13 year old daughter. I am proud to say that I managed to come to the table and eat dinner every night. Try to keep to as normal a family life as you can and don't hesitate to ask those teens for help with chores! Good luck, stay strong and don't feel overwhelmed. You're not alone - this site is a godsend when you're feeling low. Hugs, Anna

jessiesmom1

My Reconstruction Experience

I was diagnosed with triple negative breast cancer in Dec. 2009. I had a right side only mastectomy in March 2010. At that time I had a tissue expander placed in the right side. My oncologist did not want any procedures (including saline fills) done during chemo so I did not have any until after treatment was over. I did not have radiation - only chemo. I needed only 1 saline fill before the expander was removed and the implant was placed. The surgery itself went well (June 2010)  but I was extremely unhappy with the result. My right breast completely lacked the mammary fold and basically had a hard ridge of tissue. The left/non-cancerous  breast was reduced and lifted to match the implant side. That looked OK. The plastic surgeon surgeon's response was lackadaisacal at best. He seemed to have little interest in fixing the implant side. I got referrals for 3 other plastic surgeons from my primary care doctor, general surgeon and my oncologist. I visited all 3 and chose 1 to do a revision reconstruction. The doctor I chose said she would rate the initial work I had done as a 4 on a scale of 10. Great. She told me precisely how she planned to fix it and what she would do differently than doctor #1. I couldn't  be more pleased with the result. It is symmetrical with the other breast. I have not had the nipple reconstruction done. 

I chose to have reconstruction done because I wanted to look symmetrical and look "normal" when I was dressed. That was important to me. I did not want to look like a cancer patient. My children were 17 and 19 at the time - a senior in high school and a college sophmore. They were very supportive as was my husband. He did not care whether or not I had reconstruction. He left it entirely up to me. Each person's needs are different and you have every right to your feelings about how your body looks. We all deal with it differently. Some are happy without reconstruction. Others are OK with wearing a prosthesis. Still others want surgical reconstruction. There are many types of reconstruction, also. I am sorry that you are having such a difficult time. I did not feel confident in my original plastic surgeon doing the revision properly so I went elsewhere. I would suggest that you consult with at least 2 other surgeons to see what they believe can be done to fix what has already been done.

I wish you the best of luck. Please let us know what you decide to do.

IRENE

 

VickiSam

jessiesmom1 said:

My Reconstruction Experience

I was diagnosed with triple negative breast cancer in Dec. 2009. I had a right side only mastectomy in March 2010. At that time I had a tissue expander placed in the right side. My oncologist did not want any procedures (including saline fills) done during chemo so I did not have any until after treatment was over. I did not have radiation - only chemo. I needed only 1 saline fill before the expander was removed and the implant was placed. The surgery itself went well (June 2010)  but I was extremely unhappy with the result. My right breast completely lacked the mammary fold and basically had a hard ridge of tissue. The left/non-cancerous  breast was reduced and lifted to match the implant side. That looked OK. The plastic surgeon surgeon's response was lackadaisacal at best. He seemed to have little interest in fixing the implant side. I got referrals for 3 other plastic surgeons from my primary care doctor, general surgeon and my oncologist. I visited all 3 and chose 1 to do a revision reconstruction. The doctor I chose said she would rate the initial work I had done as a 4 on a scale of 10. Great. She told me precisely how she planned to fix it and what she would do differently than doctor #1. I couldn't  be more pleased with the result. It is symmetrical with the other breast. I have not had the nipple reconstruction done. 

I chose to have reconstruction done because I wanted to look symmetrical and look "normal" when I was dressed. That was important to me. I did not want to look like a cancer patient. My children were 17 and 19 at the time - a senior in high school and a college sophmore. They were very supportive as was my husband. He did not care whether or not I had reconstruction. He left it entirely up to me. Each person's needs are different and you have every right to your feelings about how your body looks. We all deal with it differently. Some are happy without reconstruction. Others are OK with wearing a prosthesis. Still others want surgical reconstruction. There are many types of reconstruction, also. I am sorry that you are having such a difficult time. I did not feel confident in my original plastic surgeon doing the revision properly so I went elsewhere. I would suggest that you consult with at least 2 other surgeons to see what they believe can be done to fix what has already been done.

I wish you the best of luck. Please let us know what you decide to do.

IRENE

 

Shannday ...

How are you doing ???   Please provide us "Sisters in PINK" with an update - when time permits ..

 

We are thinking of you dear Sister.

 

Vicki Sam

GlowMore

VickiSam said:

Shannday ...

How are you doing ???   Please provide us "Sisters in PINK" with an update - when time permits ..

 

We are thinking of you dear Sister.

 

Vicki Sam

Shannaday

Looks like she joined on 14th ...made one post and has not returned.........

VickiSam

GlowMore said:

Shannaday

Looks like she joined on 14th ...made one post and has not returned.........

.. ahhhh, too bad ..

Keeping my fingers crossed, she checks in with us!

 

Vicki Sam