Seeking support for mastectomy without reconstruction

2

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #22

    I was diagnose in 1994 that is over 18 1/2 years ago.  I had a mastectomy and never had reconstruction.  I have absolutely no regrets.  I understand why some want them but for me I made the correct decision.

    The only person you need to please is yourself.  If you don't want one, you don't have to explain your decision to anyone, it's none of their business.  If you change your mind and I had a friend who has after 27 years did just that, she had reconstruction and is happy.

    It isn't written in stone that you must make the decision now.  There is no NOW or NEVER.

    For now, your decision is NONE.  If people persist in their need to understand, walk away.

    Best to you,

    Doris

  • suedrink
    suedrink Member Posts: 4 Member
    #23
    I did not have reconstruction after double mastectomy

    Dear Jessie,

    I was 65 when I was diagnosed with a recurrence of breast cancer...Stage III.  I had to have chemo first to shrink the area of cancer because I would not have had clear margins.  Because it was the second time I chose to have a double mastectomy.  I consulted with a plastic surgeon before surgery to see if I would be a candidate for reconstruction...I had radiation to my skin when first diagnosed 7 years before that.  My skin was in good condition so I was a candidate.  However, I chose to not have reconstruction while having the masectormy.  I have been with my husband since I was 15...he wanted me alive and did not mind me having no breasts.  I felt 80 percent sure that I would be okay, but at that time knew that I could choose reconstruction after surgery if I wanted to. 

    After surgery we found that the cancer had spread into my nodes.  It was quite extensive in the chest area...I needed radiation again or it would return in a few years.  Radiation a second time tightens and compromises your skin....reconstruction was no longer an option.

    I looked at my chest immediately after surgery.  I had 2 even, scars that looked like neat smiles.  It wasn't gross at all. 

    Feeling the way you do, you CAN wait until after the mastectomy and decide if you want reconstruction.  You are much younger than I am and you might feel differently.  I had my breasts for a long time and put them to good use....nursed 2 children, etc!  Silicone breasts are quite realistic...I don't wear mine since my skin is sensitive due to all the radiation.  I wear some soft puffy ones with certain outfits.  Otherwise I have learned to shop for a flat chest.

    If it is possible, ask your surgeon about nipple sparing.  I do miss my nipples!  My chest looks very plain!

    I feel very much like a woman, wife, mother, and grandma...no one cares that I don't have breasts.  I was surpirsed at first that no one stared if I went out flat chested.  My husband reminded me that people stare at big breasts...not little for flat ones!

    You will be fine.  You will be beautiful.  You have choices.  You can wait if you want.

     

  • cathyp
    cathyp Member Posts: 376 Member
    #24
    suedrink said:

    I did not have reconstruction after double mastectomy

    Dear Jessie,

    I was 65 when I was diagnosed with a recurrence of breast cancer...Stage III.  I had to have chemo first to shrink the area of cancer because I would not have had clear margins.  Because it was the second time I chose to have a double mastectomy.  I consulted with a plastic surgeon before surgery to see if I would be a candidate for reconstruction...I had radiation to my skin when first diagnosed 7 years before that.  My skin was in good condition so I was a candidate.  However, I chose to not have reconstruction while having the masectormy.  I have been with my husband since I was 15...he wanted me alive and did not mind me having no breasts.  I felt 80 percent sure that I would be okay, but at that time knew that I could choose reconstruction after surgery if I wanted to. 

    After surgery we found that the cancer had spread into my nodes.  It was quite extensive in the chest area...I needed radiation again or it would return in a few years.  Radiation a second time tightens and compromises your skin....reconstruction was no longer an option.

    I looked at my chest immediately after surgery.  I had 2 even, scars that looked like neat smiles.  It wasn't gross at all. 

    Feeling the way you do, you CAN wait until after the mastectomy and decide if you want reconstruction.  You are much younger than I am and you might feel differently.  I had my breasts for a long time and put them to good use....nursed 2 children, etc!  Silicone breasts are quite realistic...I don't wear mine since my skin is sensitive due to all the radiation.  I wear some soft puffy ones with certain outfits.  Otherwise I have learned to shop for a flat chest.

    If it is possible, ask your surgeon about nipple sparing.  I do miss my nipples!  My chest looks very plain!

    I feel very much like a woman, wife, mother, and grandma...no one cares that I don't have breasts.  I was surpirsed at first that no one stared if I went out flat chested.  My husband reminded me that people stare at big breasts...not little for flat ones!

    You will be fine.  You will be beautiful.  You have choices.  You can wait if you want.

     

    Dear Jessie,
    I had DBL MX in

    Dear Jessie,

    I had DBL MX in 2008 when I was 47 and married.  I was admired for my figure but I had a feeling for 18 years after being dx with Hodgkins Disease, I would loose the boobs someday so I was never attached to them.  I had Hodgkins disease in 1989 and 1994 and breast cancer from the radiation is common.  Reconstruction wouldn't have been easy because my entire chest had been radiated and it might have not healed well.  I'm so sorry I didn't insist the surgeon leave me with a smooth chest.  He left flaps in in case I changed my mind.  I used to wear fake ones but I think I did that to make others feel comfortable.  Now I rarely wear them.  The only time I had a tinge of regret was on a trip to the Carribean.  Most women were topless and all others had bikinis on.  I got over it really fast because ...it just didn't matter.

    I know what you mean about being told "just do what you want to do".  Sometimes you just need to hear from others and their thought process.  Best of luck to you!

    Cathy

  • susie09
    susie09 Member Posts: 2,930
    #25
    SIROD said:

    I was diagnose in 1994 that is over 18 1/2 years ago.  I had a mastectomy and never had reconstruction.  I have absolutely no regrets.  I understand why some want them but for me I made the correct decision.

    The only person you need to please is yourself.  If you don't want one, you don't have to explain your decision to anyone, it's none of their business.  If you change your mind and I had a friend who has after 27 years did just that, she had reconstruction and is happy.

    It isn't written in stone that you must make the decision now.  There is no NOW or NEVER.

    For now, your decision is NONE.  If people persist in their need to understand, walk away.

    Best to you,

    Doris

    Just wishing you good luck

    Just wishing you good luck Jesse and just saying again what others have said that you don't have to decide now.  You can always have reconstruction years down the road if you should decide to.

    HUGS!

  • sweetvickid
    sweetvickid Member Posts: 459 Member
    #26
    You do what you want!

    Everyone just assumed after my double mastectomy I would have reconstruction.  At the time I just couldn't see putting myself thru that just to have bumps in front.  Surgeon tried to get me to atleast keep the extra skin in case I changed my mind.  Told him nope I want a smooth chest.  That was over two years ago and I have not regretted the decision.  To me it is very obvious I have no breast but I am amzed at the number of people who don't notice.  I don't wear foobs.  I have learned how to dress to help camoflauge my chest. 

  • NorcalJ
    NorcalJ Member Posts: 187
    #27
    Hi Jessie,
    You definitely

    Hi Jessie,

    You definitely have the right idea---it's your body, therefore, your health and your decision .  It's not a decision that you have to make now--something they don't always tell you.  You can do it in 3 months, 3 years, or since you're so young, 30 years!

    I'm in my 60's and chose to have bilat. reconstruction after mastectomies,  chemo and radiation, but it was a personal choice (as in---no one elses business or decision but mine!)  My husband too just wanted me to be well, the rest was insignificant.  We are not the sum of our body parts.

    You go with your gut.  Sometimes our bells and whistles start ringing for a reason.  Whatever you decide to do will be right for you.  Your doctor, friends and family are not the ones having the treatments and surgery, so however important, and close to you they are, (and it sounds like they are,which is a good thing), make a decision on what YOU want.

    You go girl!

    Jan  

  • NorcalJ
    NorcalJ Member Posts: 187
    #28
    Hi Jessie,
    You definitely

    Hi Jessie,

    You definitely have the right idea---it's your body, therefore, your health and your decision .  It's not a decision that you have to make now--something they don't always tell you.  You can do it in 3 months, 3 years, or since you're so young, 30 years!

    I'm in my 60's and chose to have bilat. reconstruction after mastectomies,  chemo and radiation, but it was a personal choice (as in---no one elses business or decision but mine!)  My husband too just wanted me to be well, the rest was insignificant.  We are not the sum of our body parts.

    You go with your gut.  Sometimes our bells and whistles start ringing for a reason.  Whatever you decide to do will be right for you.  Your doctor, friends and family are not the ones having the treatments and surgery, so however important, and close to you they are, (and it sounds like they are,which is a good thing), make a decision on what YOU want.

    You go girl!

    Jan  

  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #29
    suedrink said:

    I did not have reconstruction after double mastectomy

    Dear Jessie,

    I was 65 when I was diagnosed with a recurrence of breast cancer...Stage III.  I had to have chemo first to shrink the area of cancer because I would not have had clear margins.  Because it was the second time I chose to have a double mastectomy.  I consulted with a plastic surgeon before surgery to see if I would be a candidate for reconstruction...I had radiation to my skin when first diagnosed 7 years before that.  My skin was in good condition so I was a candidate.  However, I chose to not have reconstruction while having the masectormy.  I have been with my husband since I was 15...he wanted me alive and did not mind me having no breasts.  I felt 80 percent sure that I would be okay, but at that time knew that I could choose reconstruction after surgery if I wanted to. 

    After surgery we found that the cancer had spread into my nodes.  It was quite extensive in the chest area...I needed radiation again or it would return in a few years.  Radiation a second time tightens and compromises your skin....reconstruction was no longer an option.

    I looked at my chest immediately after surgery.  I had 2 even, scars that looked like neat smiles.  It wasn't gross at all. 

    Feeling the way you do, you CAN wait until after the mastectomy and decide if you want reconstruction.  You are much younger than I am and you might feel differently.  I had my breasts for a long time and put them to good use....nursed 2 children, etc!  Silicone breasts are quite realistic...I don't wear mine since my skin is sensitive due to all the radiation.  I wear some soft puffy ones with certain outfits.  Otherwise I have learned to shop for a flat chest.

    If it is possible, ask your surgeon about nipple sparing.  I do miss my nipples!  My chest looks very plain!

    I feel very much like a woman, wife, mother, and grandma...no one cares that I don't have breasts.  I was surpirsed at first that no one stared if I went out flat chested.  My husband reminded me that people stare at big breasts...not little for flat ones!

    You will be fine.  You will be beautiful.  You have choices.  You can wait if you want.

     

    Jessie, no one can tell you

    Jessie, no one can tell you or make you do anything you don't want to do.  Everyone is in charge of their own health decisions.  You've got a lot of good posts here and I hope that they help you, since you seem to still be struggling somewhat with a decision.  Just wishing you all the luck in the world!

     

  • muffingranma
    muffingranma Member Posts: 107
    #30
    mastectomy
    I am not the best person to talk to about this. I had a mastectomy of one breast. I am 66. I had a few problems with having to be drained a lot. My drains I think came out to soon. Five years ago I had a lumpectomy then radiation. I was happy not to have had a mastectomy. But then I     received radiation cancer from the treatments five years ago. I had no choice. I had to have a mastectomy. I have no choice now. I can't have the reconstruction, but I really don't think I would want it, but I am older than you, I don't know if you could have it later or have to have it soon. I wasn't given an option to even have it. I know you should go with your heart and talk to as many as you can.
  • Pink Rose
    Pink Rose Member Posts: 493
    #31
    Jessies miracle said:

    My decision :)

    After thinking about all the factors, I have decided to not have reconstruction.  Once I made the phone call to cancel the recon I felt relieved.  I really do feel it's the "best" choice for me at this point.  I have a 5 year old little girl and a husband, and I don't want any more pain, recovery, risks.  I am praying that I will be done with cancer after my double mastectomy surgery on April 17th (it was moved up a day).  I feel God told me in the beginning of this journey, before I had my PET sca & brain MRI, that the cancer was gone.  After my second AC treatment my lymph node (which when biopsied was negative for cancer) had shrun from the size of an egg down to barely detectable.  By four weeks my tumor was from 2cm to 1cm and by 8 weeks the tumor was undetectable.  I feel that God told me to not give into the "sea of temptation" which in my thoughts means it's tempting for me to want to be "normal" and "sexy" by public standards.  However in my true thoughts I don't feel I need breast to be normal or sexy and furthermore with all the girls in our family (daughter, nieces etc) I want to let them know I am ok being a little different than everyone else.  I feel God has given me that peace about it for a reason and that's my "gut" feeling, I think that's God telling me for whatever reason to make this choice.  I have a niece that has a weak muscled eye, and I think of her when I think of not having recon, in a way I also want to show her it's ok to not be "perfect" and to be HAPPY with that! Thank you all for your input, it really does mean a lot to me to know that you are ok and happy with your decisions.  I really was just felt I was the only person not going to reconstruct and I am saddened but happy to know you all are here with me and it's ok :) Thanks again!

    I am glad your decision is

    I am glad your decision is made and that you feel so good about it!  It's also good to read that by reading all of the posts on here that it helped you. 

    Good luck to you on the 17th.  Keep checking back with us so we know how you are.

    Hugs, Rose

  • Jessies miracle
    Jessies miracle Member Posts: 7
    #32
    muffingranma said:

    mastectomy

    I am not the best person to talk to about this. I had a mastectomy of one breast. I am 66. I had a few problems with having to be drained a lot. My drains I think came out to soon. Five years ago I had a lumpectomy then radiation. I was happy not to have had a mastectomy. But then I     received radiation cancer from the treatments five years ago. I had no choice. I had to have a mastectomy. I have no choice now. I can't have the reconstruction, but I really don't think I would want it, but I am older than you, I don't know if you could have it later or have to have it soon. I wasn't given an option to even have it. I know you should go with your heart and talk to as many as you can.
    Thank you all!

    I just wanted to say thank you all for your support and encouragement! The next step is surgery now on the 16th and hopefully moving on with life! Thank you all again for taking your time to lift me up! I really appreciate it :)

    Jessie

  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #33
    Jessies miracle said:

    Thank you all!

    I just wanted to say thank you all for your support and encouragement! The next step is surgery now on the 16th and hopefully moving on with life! Thank you all again for taking your time to lift me up! I really appreciate it :)

    Jessie

    Jessie, that's so wonderful

    Jessie, that's so wonderful that the posts lifted you up and made you feel better.  We are all here for you!

     

    Best of luck on the 16th!

     

    Sue :)

  • dthompson
    dthompson Member Posts: 149
    #34
    A mans point of view

    Hi Jessie,

    First of all I have to say that I am sorry you are having to go through this and even though I cannot put myself in your shoes I can tell you my perspecive as my wife was just very recently in your same situation. She was diagnosed with stage 2 grade 3 IDC. She was given the option of a lumpectomy or mastectomy, she decided to g with a double mastecotmy after chemo. After going through the chem and as the surgery date grew near she was just exhausted and said to me " I'm just so ready to get this over with that I may just do the mastectomy and not have reconstruction because it will just lead to another surgery and more Dr's appontments, how would yuo feel about me with not doing reconstruction and having no breasts"?   My heartfelt response was..

    ' I love you no matter what, and if you decide to not have reconstruction, I will still find you incredibly attactive and it will not change the way I feel abot you at all"". I will support YOUR decision. As a husband I just wanted her to be cancer free and healthy, with or without breasts. I don't know if you are married or single but if you are married, I would hope that your husband would support you in YOUR decision. If you are single, If a guys decision to like you is based on your breasts then you are better off without him. Not sure if this helps or not but remember a womans breasts do not determine who she is from a mans point of view. I know I can't related to how important they are to a woman, but you need to do what  YOU feel comfortable with.God bless.

     

    Dennis

  • dthompson
    dthompson Member Posts: 149
    #35
    Jessies miracle said:

    Thank you all!

    I just wanted to say thank you all for your support and encouragement! The next step is surgery now on the 16th and hopefully moving on with life! Thank you all again for taking your time to lift me up! I really appreciate it :)

    Jessie

    Please keep us posted on the

    Please keep us posted on the surgery and update as often as possible, we will be thingking and praying for you. Getting the surgery behind you is a mojor step to getting back to a somewhat normal life. Are you going to have to do chemo after surgery? God bless

     

    Dennis

  • Angie2U
    Angie2U Member Posts: 2,991
    #36
    dthompson said:

    A mans point of view

    Hi Jessie,

    First of all I have to say that I am sorry you are having to go through this and even though I cannot put myself in your shoes I can tell you my perspecive as my wife was just very recently in your same situation. She was diagnosed with stage 2 grade 3 IDC. She was given the option of a lumpectomy or mastectomy, she decided to g with a double mastecotmy after chemo. After going through the chem and as the surgery date grew near she was just exhausted and said to me " I'm just so ready to get this over with that I may just do the mastectomy and not have reconstruction because it will just lead to another surgery and more Dr's appontments, how would yuo feel about me with not doing reconstruction and having no breasts"?   My heartfelt response was..

    ' I love you no matter what, and if you decide to not have reconstruction, I will still find you incredibly attactive and it will not change the way I feel abot you at all"". I will support YOUR decision. As a husband I just wanted her to be cancer free and healthy, with or without breasts. I don't know if you are married or single but if you are married, I would hope that your husband would support you in YOUR decision. If you are single, If a guys decision to like you is based on your breasts then you are better off without him. Not sure if this helps or not but remember a womans breasts do not determine who she is from a mans point of view. I know I can't related to how important they are to a woman, but you need to do what  YOU feel comfortable with.God bless.

     

    Dennis

    Good luck Jesse on the 17th! 

    Good luck Jesse on the 17th!  I will be thinking of you and praying.

    Hugs, Angie

  • Kylez
    Kylez Member Posts: 3,761 Member
    #37
    dthompson said:

    Please keep us posted on the

    Please keep us posted on the surgery and update as often as possible, we will be thingking and praying for you. Getting the surgery behind you is a mojor step to getting back to a somewhat normal life. Are you going to have to do chemo after surgery? God bless

     

    Dennis

    Sending all the luck in the

    Sending all the luck in the world and prayers for your upcoming surgery!

    Hugs, Kylez

  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #38
    NorcalJ said:

    Hi Jessie,
    You definitely

    Hi Jessie,

    You definitely have the right idea---it's your body, therefore, your health and your decision .  It's not a decision that you have to make now--something they don't always tell you.  You can do it in 3 months, 3 years, or since you're so young, 30 years!

    I'm in my 60's and chose to have bilat. reconstruction after mastectomies,  chemo and radiation, but it was a personal choice (as in---no one elses business or decision but mine!)  My husband too just wanted me to be well, the rest was insignificant.  We are not the sum of our body parts.

    You go with your gut.  Sometimes our bells and whistles start ringing for a reason.  Whatever you decide to do will be right for you.  Your doctor, friends and family are not the ones having the treatments and surgery, so however important, and close to you they are, (and it sounds like they are,which is a good thing), make a decision on what YOU want.

    You go girl!

    Jan  

    I thought Hearty Pioneer

    I thought Hearty Pioneer might find this post helpful, so, I am pushing it up to the top for her.

    Jan

  • JJDS
    JJDS Member Posts: 258
    #39
    desertgirl947 said:

    It's good to read that you

    It's good to read that you are secure in your decision.  That is the biggest part of it all -- having peace in decisions made.  It also is encouraging to see how you view your opportunities to minister to others, such as your niece. 

     

    Your feeling good about your

    Your feeling good about your choice is so important.  I know it isn't always easy to make these big decisions regarding our surgery's or treatment's.  I am wishing you the best in life.

  • Swanee50
    Swanee50 Member Posts: 5
    #40
    No reconstruction

    Had a double mastectomy by choice. Md thought I had stage one. Ended up with Stage 2b with 1 I lymph node positive. Best decision not to do reconstruction but I had to lose weight. I've lost 20 and chemo starts tomorrow. I will continue to go to the gym. Some clothes looked so bad but I'm finding the styles that work really well, like high cut blouses off the shoulder. Pockets and button downs.

    most important was the stomach had to go or my shape was awful! Down to 185 and my tire is small now. Wearing 16 and shooting for 14! Go for it and good luck. The scar tissue from reconstruction is painful according to my sister in law. She has stage 4, triple neg. not good.

    by the way, I was small to begin with, am 50 and recoverwithout hot reconstruction is much faster. I regret nothing and my wife doesn't mind either. 

  • Pink Rose
    Pink Rose Member Posts: 493
    #41
    Swanee50 said:

    No reconstruction

    Had a double mastectomy by choice. Md thought I had stage one. Ended up with Stage 2b with 1 I lymph node positive. Best decision not to do reconstruction but I had to lose weight. I've lost 20 and chemo starts tomorrow. I will continue to go to the gym. Some clothes looked so bad but I'm finding the styles that work really well, like high cut blouses off the shoulder. Pockets and button downs.

    most important was the stomach had to go or my shape was awful! Down to 185 and my tire is small now. Wearing 16 and shooting for 14! Go for it and good luck. The scar tissue from reconstruction is painful according to my sister in law. She has stage 4, triple neg. not good.

    by the way, I was small to begin with, am 50 and recoverwithout hot reconstruction is much faster. I regret nothing and my wife doesn't mind either. 

    Hoping that your surgery was

    Hoping that your surgery was successful Jesse and that you are recovering easily.

    Rose

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