Newly Diagnosed

gems
gems Member Posts: 10

It has been a whirlwind start of the new year. I was diagnosed with Invasive Ductal Carcinoma of the left breast on January 9th. I am scheduled for a mastectomy this Friday. I did not have any of the risk factors and was totally caught off guard. I have yet to decide what makes me more upset: having the CA, or having two lousy choices for treatment. I am not having any reconstruction. I do count myself among the lucky few. I have a wonderful support network. Every day is a challenge. I get tearful and cry at times. I am sometimes withdrawn. I told my wonderful husband that the only time I can escape this is when I am asleep. thankfully I am still able to sleep, but it does take me longer to fall asleep. So, what do I need? Has anyone not had reconstructions and lived happily without it. How have you managed the prosthesis? Does it really matter if you don't wear on all the time? Has anyone had back problems from being lopsided? thanks in advance.

Comments

  • Rague
    Rague Member Posts: 3,653 Member
    Quite happy

    I'm quite happy without recon.

    I'm IBC (Inflammatory Breast Cancer) so at the time of mod. rad. mast., recon was not an option for at least a yr - that was 3+ yrs ago.  I did think about it but have decided as I have no issues doing anyhing I want to - why have more surgery and possibly have some bad SE's with it that might limit that.  Also Hubby does not want me to have any unnecessary surgeries but will support me if I decided to.

    I really like my pros. and wear it all  the time.  It does not matter  rather or not you wear it - do what is comfortable for you and how you feel.  I do have back problems but they are from the arthritis I've had for MANY years and osteoporosis. 

    Winyan - The Power Within

    Susan

  • Rague
    Rague Member Posts: 3,653 Member
    Oops

    Dreaded double post 

    Winyan - The Power Within

    Susan

  • hope4thebest
    hope4thebest Member Posts: 108
    trust your intuition

    I just wanted to comment that each woman is different.  Some get reconstruction. like me, some do not, like my good friend and my Grandma.  The women who choose not to reconstruct are strong and courageous.  We all are!!   My Grandma just stuffed her bra, my good friend doesn't care and shows her battlescars with pride.  They are perfect example of proud survivors.  

    There are lots of ways to camouflage-- so many blouses have prints and ruffles, or a nice scarf can do wonders.  

    I am glad you found this board, it will help you out alot.

     

     

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    I wanted to say Welcome to our Support Site --

    It seems that you have several concerns --and several of our Sisters in PINK have provided information regarding their personal experience (s).  I opted for a bilateral mastectomy, and immediate reconstruction -- so I can't offer you any support regarding prostheses.

    I had reconstruction, on both breast --- several bumps in the road for me, but I am so happy with my decision and my results.

    Can you call your Plastic Surgeon and get back in to go over your concerns, regarding back issues, and your fear of being lopsided -- .  I was lopsided due to a staph infection with my tissue expanders -- and all I can say --  such an emotional time in my life.

    See if your Plastic Surgeon has a patient or two for you to speak with regarding both procedures. 

    Good luck .. and update us when possible.

    Vicki Sam

     

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    welcome....good place to join

    welcome....good place to join in time of need...I had DCIS Jan 2009, lumpectomy, radation and tamoxifen.

    I have no advice on reconstruction but could I suggest a JOURNAL? IT seemed silly when I rec'd 2 as gifts at the start, but in hind sight I now see how helpful they in fact were.

     

    Denise

  • Unhappy
    Unhappy Member Posts: 88
    I had a mastectomy in Nov.2012

    I thought about reconstruction but never had it because of having to take the time to recover from it. I went the last of December and was fitted with a prosthesis I was affraid of being lopsided too but I like the way they look my sister even ask me which one the had took off anyways.They are also weighted to match the other side .As for the crying that is part of the reaction to breast cancer I think.It does get better.This site is also helpful there are a lot of great ladies on here who can help you with any fears you may have.

  • jamiegww
    jamiegww Member Posts: 384
    Give yourself time.

    It takes time to get used to what has happened to you.  Don't be afraid to cry.  You didn't ask for this and it takes time to accept it.  I had my right breast removed in Dec. 2009.  I don't like being lopsided but I have learned to live with it.  I only wear a prosthesis when I go somewhere.  I don't wear it around the house but I am fortunate to live out in the country where I can walk around my yard without anyone seeing me.  I tried mastectomy bras but discovered I was more comfortable wearing a tank top with a built in pocketed shelf bra.  We are all different and you will figure out what works best for you but it will take time.  I'm glad you have a wonderful support network.  Please keep us updated and know that we are here for you.  You are not alone in this battle!

    HUGS!!!

    Jamie

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    Hi Gems,
          I was Dx with

    Hi Gems,

          I was Dx with IBC back in 2010 Did chemo, surgery and rads.  I didn't do reconstruction. I have never regretted it either. I am a D cup so I am larger. I have never had back pain. It does make me alittle off balance. I notice this when I put my pants on one leg at a time. I have to put my hand on the wall or bed for balance. Just little things like that. I did not have risk factors either I am the first one in out family to ever have breast cancer. I wear sports bra's because they stay flat on the empty side. (right). I tried prosthesis didn't like them they were hot ( I live in Florida ). I just didn't like the extra trouble. It doesn't bother me to go with out anything there. It is wonderful that you  have a supportive family I do too and it makes all the difference. Your feelings are normal. You have been through alot and have alot to go through. My surgery took about 3 hours. Everything went fine. I had a drain for 5 weeks ( that was a pain in the butt ) yet much better than having to be drained every week. You will be fine. take one day at a time even a hour at a time if needed. We are here for you anything you need. You can ask questions, Vent, Cry, We will cry with you, Scream yell, some times it helps. What ever you need darlin. We are here.

    I wish you all the best in your journey, And the more you learn the better you will feel. Knowledge is power.

    Take care Kay, 

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Hi Gems.  I'm sorry you have

    Hi Gems.  I'm sorry you have reason to find us.  This is an amazing group!  Feel free to vent, cry, ask questions, share your joys and your sorrows....this is a great place for all of that. safe too.

    First, that roller coaster of emotions is normal now. it will take some time to adjust to all the new stuff you've got going on.  You may want to consider medication, many of us take meds to help deal with all the emotions.  You should be able to talk with your onc about the right med for you, be sure and let them know how your sleep has been effected.  Lack of sleep will make you even more emotional.

    I had a bilateral with no reconstruction.  Like Susan and Kay, I'm IBC so it is not recommended.  I wear prosthesis.  Sometimes I go without them, especially if I'm not going anywhere public or I'm wearing a heavy coat. (Due to some issues, I'm lumpy and bumpy without them.)

    Have you ever seen or felt a prosthesis?  If not, and you can make the time I would recommend it.  I never saw or felt one before I was fitted, I had no idea what to expect.  Just google 'breast prosthesis' with the name of your city or area and see what comes up.  I found a certified mastectomy fitter that way, and she billed my insurance directly.  You should also check with your cancer center, they might recommend someone. or have someone on site.

    The prosthesis fits in a pocket in the bra.  You can get specific mastectomy bras that come with pockets, or my fitter will sew pockets into any regular bra.  Just like your boobs, a good bra makes a difference with how the prosthesis looks.

    Best wishes with the surgery this friday...I hope the surgery goes smoothly and your recovery is swift.

    Hugs,

    Linda

  • gems
    gems Member Posts: 10
    jamiegww said:

    Give yourself time.

    It takes time to get used to what has happened to you.  Don't be afraid to cry.  You didn't ask for this and it takes time to accept it.  I had my right breast removed in Dec. 2009.  I don't like being lopsided but I have learned to live with it.  I only wear a prosthesis when I go somewhere.  I don't wear it around the house but I am fortunate to live out in the country where I can walk around my yard without anyone seeing me.  I tried mastectomy bras but discovered I was more comfortable wearing a tank top with a built in pocketed shelf bra.  We are all different and you will figure out what works best for you but it will take time.  I'm glad you have a wonderful support network.  Please keep us updated and know that we are here for you.  You are not alone in this battle!

    HUGS!!!

    Jamie

    Hi Jamie, where did you find

    Hi Jamie, where did you find the pocketed tank top? That sounds like a great idea. 

  • gems
    gems Member Posts: 10

    Hi Gems,
          I was Dx with

    Hi Gems,

          I was Dx with IBC back in 2010 Did chemo, surgery and rads.  I didn't do reconstruction. I have never regretted it either. I am a D cup so I am larger. I have never had back pain. It does make me alittle off balance. I notice this when I put my pants on one leg at a time. I have to put my hand on the wall or bed for balance. Just little things like that. I did not have risk factors either I am the first one in out family to ever have breast cancer. I wear sports bra's because they stay flat on the empty side. (right). I tried prosthesis didn't like them they were hot ( I live in Florida ). I just didn't like the extra trouble. It doesn't bother me to go with out anything there. It is wonderful that you  have a supportive family I do too and it makes all the difference. Your feelings are normal. You have been through alot and have alot to go through. My surgery took about 3 hours. Everything went fine. I had a drain for 5 weeks ( that was a pain in the butt ) yet much better than having to be drained every week. You will be fine. take one day at a time even a hour at a time if needed. We are here for you anything you need. You can ask questions, Vent, Cry, We will cry with you, Scream yell, some times it helps. What ever you need darlin. We are here.

    I wish you all the best in your journey, And the more you learn the better you will feel. Knowledge is power.

    Take care Kay, 

    Thank you so much for all the

    Thank you so much for all the well wishes. 

  • gems
    gems Member Posts: 10

    Hi Gems,
          I was Dx with

    Hi Gems,

          I was Dx with IBC back in 2010 Did chemo, surgery and rads.  I didn't do reconstruction. I have never regretted it either. I am a D cup so I am larger. I have never had back pain. It does make me alittle off balance. I notice this when I put my pants on one leg at a time. I have to put my hand on the wall or bed for balance. Just little things like that. I did not have risk factors either I am the first one in out family to ever have breast cancer. I wear sports bra's because they stay flat on the empty side. (right). I tried prosthesis didn't like them they were hot ( I live in Florida ). I just didn't like the extra trouble. It doesn't bother me to go with out anything there. It is wonderful that you  have a supportive family I do too and it makes all the difference. Your feelings are normal. You have been through alot and have alot to go through. My surgery took about 3 hours. Everything went fine. I had a drain for 5 weeks ( that was a pain in the butt ) yet much better than having to be drained every week. You will be fine. take one day at a time even a hour at a time if needed. We are here for you anything you need. You can ask questions, Vent, Cry, We will cry with you, Scream yell, some times it helps. What ever you need darlin. We are here.

    I wish you all the best in your journey, And the more you learn the better you will feel. Knowledge is power.

    Take care Kay, 

    Thank you so much for all the

    Thank you so much for all the well wishes. 

  • Rague
    Rague Member Posts: 3,653 Member

    Hi Gems.  I'm sorry you have

    Hi Gems.  I'm sorry you have reason to find us.  This is an amazing group!  Feel free to vent, cry, ask questions, share your joys and your sorrows....this is a great place for all of that. safe too.

    First, that roller coaster of emotions is normal now. it will take some time to adjust to all the new stuff you've got going on.  You may want to consider medication, many of us take meds to help deal with all the emotions.  You should be able to talk with your onc about the right med for you, be sure and let them know how your sleep has been effected.  Lack of sleep will make you even more emotional.

    I had a bilateral with no reconstruction.  Like Susan and Kay, I'm IBC so it is not recommended.  I wear prosthesis.  Sometimes I go without them, especially if I'm not going anywhere public or I'm wearing a heavy coat. (Due to some issues, I'm lumpy and bumpy without them.)

    Have you ever seen or felt a prosthesis?  If not, and you can make the time I would recommend it.  I never saw or felt one before I was fitted, I had no idea what to expect.  Just google 'breast prosthesis' with the name of your city or area and see what comes up.  I found a certified mastectomy fitter that way, and she billed my insurance directly.  You should also check with your cancer center, they might recommend someone. or have someone on site.

    The prosthesis fits in a pocket in the bra.  You can get specific mastectomy bras that come with pockets, or my fitter will sew pockets into any regular bra.  Just like your boobs, a good bra makes a difference with how the prosthesis looks.

    Best wishes with the surgery this friday...I hope the surgery goes smoothly and your recovery is swift.

    Hugs,

    Linda

    Linda brought up a good point

    Linda brought up a good point - there are many different pros and to get the right for you - you need to see a GOOD certified fitter and perhaps have different ones ordered in to see which is right.  I live 'in the booonies' and there is only one Certified fitter within over 300 miles - she is great!

    Winyan - The Power Within

    Susan