I am new here.

pamelakara
pamelakara Member Posts: 8
edited March 2014 in Breast Cancer #1
I am brand new to this CSN site. I was diagnosed with DCIS in my left breast a year ago. I have had 2 lumpectomies and radiation (mammosite). I went in October for my 1st mammogram since. At first I was told everything was fine and to come back in 6 mos., but two days later the Radiologist called back and said she'd found something that she thought we needed to biopsy. So, after the third lumpectomy in the same breast, the second type of cancer, tubular infiltration was diagnosed. Not what I was hoping for, but was anticipating that something was once again wrong. So, I am having a bilateral mastectomy Dec. 10th. I am overwhelmed, and scared. I live alone and really don't know anyone where I live (I moved to my small town just to go to school). I have family about an hour away, but none of them can get away for the amount of time I would supposedly need them for. I called my surgeon about possibly getting home health/visiting nurse, but it doesn't sound like that is going to happen. I have really tried to stay positive in spite of everything, but today I am completely overwhelmed. I have read many of the posts and it sounds like I will need help for about 7-10 days. And, I am terrified of seeing the incisions for the first time. Does this happen in the hospital, in the Dr.'s office, or at home...I don't think I could be alone for the 'unveiling'. I would appreciate any input. I feel like I'm in a deep pit right now trying to find a way out.
Thank you to all those who have posted. They really have helped in one way or another.
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Comments

  • Jeanne D
    Jeanne D Member Posts: 1,867
    #2
    Hi Pamela ☻
    I am so sorry to read that your bc is back. I have been thru bc twice myself and just got the word last Friday that some new cysts that I had removed by a lumpectomy are benign. So, as you see, you have lots of us that have been thru similar circumstances. Noone is the same, but, we can all help each other, if even just to type a hello back.

    I haven't had a mastectomy, just lumpectomy's, so, I can't answer questions concerning that respect. But, many here have had them and will help you out.

    If your family is just an hour away, maybe they can take turns in helping you out. One come one day with meals, and, then another one and so on and so on. I had very good friends and family that did that for me and it helped so much, but, it wasn't overwhelming having too much company all at once.

    As far as seeing your incisions, I think that is an individual decision. Some want to be alone and others want someone with them, a friend, a loved one, or, maybe just the plastic surgeon. You do what you want and need.

    We are here to help you, to comfort you and to support you. You are never alone!

    Love, Jeanne ♥
  • DianaLou
    DianaLou Member Posts: 30
    #3
    Hi Pamela
    I am soory about your dx. I, too, have been diagosed with DCIS and have had 2 lumpectomies and have currently just begun rads, so I can't be of any help to you in that area but I wanted to say you have come to a great sight. There are tons of great ladies (and Guys) here who can answer your questions and be a support system. You will be in my thought and prayers.

    Diana
  • pamelakara
    pamelakara Member Posts: 8
    #4
    DianaLou said:

    Hi Pamela
    I am soory about your dx. I, too, have been diagosed with DCIS and have had 2 lumpectomies and have currently just begun rads, so I can't be of any help to you in that area but I wanted to say you have come to a great sight. There are tons of great ladies (and Guys) here who can answer your questions and be a support system. You will be in my thought and prayers.

    Diana

    Thanks
    Thank you Diana & Jeanne for the supportive words. I know it will help to have a support system of people who are experiencing the same things. I really appreciate it!!
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #5
    Pamela
    So sorry to hear about your diagnosis, and having to have treatment so close to the holidays is a tough one for sure.

    Like Jeanne, I only had a lumpectomy, so I'm not qualified to answer all of your concerns and questions, but I would agree with her to talk to your doctor and again to your family about getting the support you need. You may not need someone there around the clock for more than a week or so after your surgery. Hopefully your family can cooperate by taking turns for a couple of days at a time or maybe even come before or after work after the first week or so if they're only an hour away.

    There was also a post earlier today about help with housecleaning that you might be able to take advantage of.

    If you have joined a church in your area, contact your pastor/minister about what help the congregation might be able to provide. If you haven't gotten around to joining a church but have wanted to, now might be a good time to look into it! You might also see if there's a chapter of the American Cancer Society near you that you can contact for other resources.

    This board is of course a great resource for informaton and moral support. You are always welcome even though we know you wish you didn't have to be here!

    You now have a lot of strong women praying for you and sending positive energy your way.

    Best wishes!
    Cindy
  • pamelakara
    pamelakara Member Posts: 8
    #6
    cindycflynn said:

    Pamela
    So sorry to hear about your diagnosis, and having to have treatment so close to the holidays is a tough one for sure.

    Like Jeanne, I only had a lumpectomy, so I'm not qualified to answer all of your concerns and questions, but I would agree with her to talk to your doctor and again to your family about getting the support you need. You may not need someone there around the clock for more than a week or so after your surgery. Hopefully your family can cooperate by taking turns for a couple of days at a time or maybe even come before or after work after the first week or so if they're only an hour away.

    There was also a post earlier today about help with housecleaning that you might be able to take advantage of.

    If you have joined a church in your area, contact your pastor/minister about what help the congregation might be able to provide. If you haven't gotten around to joining a church but have wanted to, now might be a good time to look into it! You might also see if there's a chapter of the American Cancer Society near you that you can contact for other resources.

    This board is of course a great resource for informaton and moral support. You are always welcome even though we know you wish you didn't have to be here!

    You now have a lot of strong women praying for you and sending positive energy your way.

    Best wishes!
    Cindy

    Thanks, Cindy. I will look
    Thanks, Cindy. I will look and see if there is a local ACS chapter in my area.
  • kimber10
    kimber10 Member Posts: 47
    #7
    pamelakara said:

    Thanks, Cindy. I will look
    Thanks, Cindy. I will look and see if there is a local ACS chapter in my area.

    Hey Pamela,
    So sorry for
    Hey Pamela,
    So sorry for what you are going through I had a bilateral mastectomy in July and I definately think you need some one with you for help with everyday things and emotional support I also had 2 lumpectomys before the mastectomy and honestly thought I can do this my husband kept saying more than anything he was worried about how I would handle it emotionally I honestly was offended and thought really I am stronger than that but after the fact not so much I was told the day after surgery I could take the "bandages" off and I could not bring myself to look at the incision it took me like a week to muster up the courage to look myself (even my sister looked before me)so I think as much emotional support as you can get.
    Stay strong and know we are all just a keyboard away

    In My Thoughts
    Kim
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #8
    pamelakara said:

    Thanks, Cindy. I will look
    Thanks, Cindy. I will look and see if there is a local ACS chapter in my area.

    Welcome, Pamela
    I just want to encourage you, even if there isn't an ACS chapter in your area, to call their 800 number, just to see what resources they might have for you. It's free, they're there 24 hours a day, and their phone line is staffed with really kind, supportive people, in my experience

    Traci
  • pamelakara
    pamelakara Member Posts: 8
    #9
    kimber10 said:

    Hey Pamela,
    So sorry for
    Hey Pamela,
    So sorry for what you are going through I had a bilateral mastectomy in July and I definately think you need some one with you for help with everyday things and emotional support I also had 2 lumpectomys before the mastectomy and honestly thought I can do this my husband kept saying more than anything he was worried about how I would handle it emotionally I honestly was offended and thought really I am stronger than that but after the fact not so much I was told the day after surgery I could take the "bandages" off and I could not bring myself to look at the incision it took me like a week to muster up the courage to look myself (even my sister looked before me)so I think as much emotional support as you can get.
    Stay strong and know we are all just a keyboard away

    In My Thoughts
    Kim

    Thanks, Kim
    Thanks so much, Kim. I am a pretty strong person, but I am feeling that mentally it will get worse before it gets better. Removing the bandages is one of my biggest fears. How was your energy level the 1st week after surgery? I know it is major surgery and will probably take a lot out of me (I am chronically anemic...my oncologist/hematologist has been working on that the past few months with iron infusion) but could you get up and take small walks at least? Any other first week challenges you can add would be greatly appreciated. Thank you so much!
    Pam
  • pamelakara
    pamelakara Member Posts: 8
    #10
    TraciInLA said:

    Welcome, Pamela
    I just want to encourage you, even if there isn't an ACS chapter in your area, to call their 800 number, just to see what resources they might have for you. It's free, they're there 24 hours a day, and their phone line is staffed with really kind, supportive people, in my experience

    Traci

    Thanks, Traci. I will do
    Thanks, Traci. I will do that.
  • dyaneb123
    dyaneb123 Member Posts: 950
    #11
    pamelakara said:

    Thanks
    Thank you Diana & Jeanne for the supportive words. I know it will help to have a support system of people who are experiencing the same things. I really appreciate it!!

    Hey Pamela
    Have you
    Hey Pamela
    Have you discussed reconstruction options yet? I had an expander put in at the time of my mastectomy which I think helps pyschologically. The recovery wasn't that bad. I was up and around by the 2nd day. I needed help with my drains for the 1st couple of days, but after that I could manage on my own.You'll want somebody with you during surgery and for a couple of days after, but really if all goes as it should, that's all you'll really need them for.Good luck. I hope it goes well for you.
    Dee
  • kimber10
    kimber10 Member Posts: 47
    #12
    pamelakara said:

    Thanks, Kim
    Thanks so much, Kim. I am a pretty strong person, but I am feeling that mentally it will get worse before it gets better. Removing the bandages is one of my biggest fears. How was your energy level the 1st week after surgery? I know it is major surgery and will probably take a lot out of me (I am chronically anemic...my oncologist/hematologist has been working on that the past few months with iron infusion) but could you get up and take small walks at least? Any other first week challenges you can add would be greatly appreciated. Thank you so much!
    Pam

    Pam,
    Lets see first couple
    Pam,
    Lets see first couple days I pretty much stayed in bed with short walks to the living room kitchen etc by day 8 I went to the doctor to have my drains removed went out to lunch, I honestly had no desire to go out and about but that was just being in public but my husband kinda pushed me into short outings every couple days and as silly as it sounds out to buy new button up shirts and pajamas to make me feel better so physically it really wasn't as bad as we all thought it would be the range of motion in my arms was the worst, Im not trying to scare you but emotionally this has really rocked me,I try to be strong but some days and the day I looked at my incision for the first time (in the shower) I just sat down and cried till the water went cold, but it is a huge help for me to vent to my sisters or daughter it is still hard everyday I have had no reconstruction so when I change or shower it still kinda upsets me but it gets better daily.
    I think just take it slow and do what you can do (don't over do)and just try to stay positive I know thats easier said than done.
    Kim
  • cvolk821
    cvolk821 Member Posts: 36
    #13
    Where are you?
    Perhaps if any of us is near you, and physically capable, we can help out. You absolutely need help the first week. Someone to help you with your drain tubes, medication and meals at least, and for emotional support at best. Is going to your home town for surgery and recovery in your family home an option?

    Connie
  • tasha_111
    tasha_111 Member Posts: 2,072
    #14
    cvolk821 said:

    Where are you?
    Perhaps if any of us is near you, and physically capable, we can help out. You absolutely need help the first week. Someone to help you with your drain tubes, medication and meals at least, and for emotional support at best. Is going to your home town for surgery and recovery in your family home an option?

    Connie

    Pamela
    I only had it once (so far) and what you are going through is a bloody nightmare..........I will be thinking of you. I am in Canada so not much help, but I am only the other side of a phone or internet line...............Huge hugs Jxxxxx
  • kimber10
    kimber10 Member Posts: 47
    #15
    cvolk821 said:

    Where are you?
    Perhaps if any of us is near you, and physically capable, we can help out. You absolutely need help the first week. Someone to help you with your drain tubes, medication and meals at least, and for emotional support at best. Is going to your home town for surgery and recovery in your family home an option?

    Connie

    Great idea Connie I know I
    Great idea Connie I know I would be more than happy to help out if that is an option

    Kim
  • Mama G
    Mama G Member Posts: 762
    #16
    kimber10 said:

    Great idea Connie I know I
    Great idea Connie I know I would be more than happy to help out if that is an option

    Kim

    ACS!!! Definately
    They will be a great source of help and information.
    I had a mastectomy and it took about 2 weeks before I could look at it. And when I did it looked bad, but it didn't bother me as much as I thought it would. There are some days when I hate looking in the mirror.
    I have a friend who had small implants put in at the time of the mastectomy and they look GREAT! If I had it to do over again I'd do that. Who cares if it's small, it's better than nothing (which is what I have now) She said it was not painful and she took about the same amount of time to recover as I did without it.
    Just an idea to think about, and maybe talk to your surgeon about.
    Good luck and God bless,
    Lorraine (in Sebastian, Florida) Where are you?
  • fauxma
    fauxma Member Posts: 3,577 Member
    #17
    Mama G said:

    ACS!!! Definately
    They will be a great source of help and information.
    I had a mastectomy and it took about 2 weeks before I could look at it. And when I did it looked bad, but it didn't bother me as much as I thought it would. There are some days when I hate looking in the mirror.
    I have a friend who had small implants put in at the time of the mastectomy and they look GREAT! If I had it to do over again I'd do that. Who cares if it's small, it's better than nothing (which is what I have now) She said it was not painful and she took about the same amount of time to recover as I did without it.
    Just an idea to think about, and maybe talk to your surgeon about.
    Good luck and God bless,
    Lorraine (in Sebastian, Florida) Where are you?

    So sorry that this is going
    So sorry that this is going on. The other ladies have made the best suggestions so I will just say you will be in my prayers.
    Stef
  • pamelakara
    pamelakara Member Posts: 8
    #18
    cvolk821 said:

    Where are you?
    Perhaps if any of us is near you, and physically capable, we can help out. You absolutely need help the first week. Someone to help you with your drain tubes, medication and meals at least, and for emotional support at best. Is going to your home town for surgery and recovery in your family home an option?

    Connie

    Georgia
    Connie,
    Your suggestion was very sweet!!! I am still trying to see if I can recruit family/friends to come a few days at a time. I live in a small town in Georgia. I have family down in Atlanta, but they all have a lot going on right now (2 have just had babies). Somehow I just have to believe it will all work out. Thank you again though...so nice to know there are wonderful, caring people like you here.
    Take care,
    Pam
  • pamelakara
    pamelakara Member Posts: 8
    #19
    pamelakara said:

    Georgia
    Connie,
    Your suggestion was very sweet!!! I am still trying to see if I can recruit family/friends to come a few days at a time. I live in a small town in Georgia. I have family down in Atlanta, but they all have a lot going on right now (2 have just had babies). Somehow I just have to believe it will all work out. Thank you again though...so nice to know there are wonderful, caring people like you here.
    Take care,
    Pam

    Thank you
    Thank you all for your heart-felt support and suggestions. I am so glad I found this site...I don't feel as alone.

    Take care, everyone!! Thanks again!!!!
    Pam
  • ms_independent
    ms_independent Member Posts: 214
    #20
    pamelakara said:

    Thank you
    Thank you all for your heart-felt support and suggestions. I am so glad I found this site...I don't feel as alone.

    Take care, everyone!! Thanks again!!!!
    Pam

    so sorry
    This computer just ate my 1st response so, if it shows up, oops!
    I am so sorry you are having to go through this with so little support. I have been feeling sorry for myself. We just moved to a new state and I have only my husband to care for me after the double mastectomy (12/15). I can stop feeling sorry for myself now. I am fortunate to have a live-in caretaker.
    I don't know your financial situation so, this may be of no use. You can hire a nursing assistant (call a home health nursing agency) for a few hours to help you with personal care (bathing etc). My sister had co-workers stop on their way to work and change her dressings. Is something like that a possibility for you?
    A really valuable piece of advice that my sister gave me is to talk about it-don't keep it a secret--you will get caring and support from people you never expected. She was right!
    Hugs, El
  • Lynda53
    Lynda53 Member Posts: 210
    #21
    Hi Pam sorry for your diagnosis
    You have come to the most supportive site.
    My thoughts
    call ACS ask for help
    google ATT Telephone Pioneers, they are a volunteer group from the old "phone companies" I work in the northeast. They are a greatgroup and may have some resources for volunteers.
    community DOT breastcancer DOT org is another helpful forum
    Warm thoughts and healing to you.
    Peace

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