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Post bilateral mastectomy and feeling alone

rla2144 Member Posts: 6

I am 7 weeks post bilateral mastectomy and feeling alone. I have gained weight and look so disfigured that I find myself not wanted to go out in public. I am having trouble with pain from the tissue expanders. I feel emotionally and physically defeated. I find myself having trouble getting through the day and am in a dark place. Did anyone else feel this way? I am looking for support or someone who can relate.


  • rah2464
    rah2464 Member Posts: 1,192

    Rla I went through a bilateral mastectomy but with immediate reconstruction. These surgeries are not easy. I am very sorry you are feeling so alone right now. Just know that we all will walk with you. Please contact your MO or surgeon and speak with someone about how difficult this is for you. There are many times supplemental services available for a patient such as therapy targeted to just this difficult experience. I hope others on this site will share their stories and that you will reach out to your medical team. Sending you a warm hug and wishing things to get easier for you quickly.

  • hippmark
    hippmark Member Posts: 92

    I am so sorry you are experiencing all of this. I did not have a mastectomy, but I wanted to say that people are here for you. Perhaps look at some medication to help with the depression. And maybe something from your Doctor for the pain for now. Maybe these will help a bit for a time until your reconstruction surgery. I agree to reach out to your Doctors and don't let up until they can help you!

    Thinking of you today. You are NOT alone!

  • rla2144
    rla2144 Member Posts: 6

    I did reach out to my surgeons and they told me to go on Facebook which hasn’t panned out any resources. I also want to thank you for this. This made me feel less alone already. Thank you for being so kind. I can’t thank you enough. Big hug

  • rla2144
    rla2144 Member Posts: 6

    thank you so much. It sounds stupid but these responses help so much. Does anyone know where I can find a support group in New Jersey?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,630


    Does your hospital or medical facility have a social worker? They can be useful in hooking you up with support services. The American Cancer Society may also be a good resource. Sharsheret may also be helpful. Take care

  • hippmark
    hippmark Member Posts: 92

    Also, call cancare. They are out of Houston. They will hook you up with a qualified volunteer that has gone through what you have. You can talk with them on the phone or email anytime. I just can't imagine your Doctors would tell you to go on Facebook. Outrageous. Don't let them off the hook. Talk to the surgeons nurse and ask them for resources other than "facebook." I like the social worker at the hospital idea. The hospital should also have cancer support groups and possibly free therapy.

  • gladis
    gladis Member Posts: 43

    Hi ria2144,

    I can relate, I'm struggling with the dark feel and want you to realize you are so very not alone

    I'm not even sure what to say to my brain about this struggle really.

    (I've IDC, and an unk sarcoma /lymphoma,) and am on a wait list for an MRI scan so they can biopsy this piece of shit lump

    and while sarcoma is time sensitive-

    the wait for an MRI and for the needed biopsy is weeks to months.

    I'm still trying to get a referral for an MRI but my doctor says wait-so as of today

    I still can't get even a paid-by- me scan. (Canada)

    Kinda feeling doomed here.

    Until recently, my art and journals and my pack of dogs kept me from sinking

    Reaching out to professionals is hard!! Getting a good one is even harder.

    (the wait here is also long to speak to anyone and never mention the S word,

    (Who would think a person in pain, undergoing pain and living through pain mental and physical would spiritually want to end it?Fear is a mind killer (DUNE)))

    as well

    as costly


    if you are like me, you hate to 'wear out' your friends or have every convo begin with the well meaning -updates on your tests, how you feel etc...(I love you and I was trying to 'forget' that for a hot minute)

    These women on this forum are incredible,when I am the lowest -I find them here, good people.

    I've been placed and have close in my pocket-these women, it helps

    even when I'm in tears in a CT

    or with my head bent to the wood floor, sobbing my guts out.

    I'll pick myself up, flick on my screen and read their stories, empathize, sympathize and just put one foot in front of the other, head to pillow and try again like these women do.

    I want to be my own hero somehow before its over.

    Hang in there, Cancer is super hard, you are doing a really hard thing, and keep doing what you are doing by reaching out.

    I hear you.


    Shout out to Moth for helping me get through - I'm thinking of you~

  • rla2144
    rla2144 Member Posts: 6

    thank you for this, so, so much

  • jrnj
    jrnj Member Posts: 407

    Rla I know it's hard. Surgery pains will get better with time. If tissue expanders are not right for you, you can consider DIEP flap. I am also struggling. Side Effects of AIs and general feelings of misery and feeling alone. You're not alone. Iam in NJ. what part are you from?

  • rla2144
    rla2144 Member Posts: 6

    hi jrnj,

    I’m sorry to hear that you are feeling similarly.
    thank you so much for responding. I am in Northern NJ and you?

  • jrnj
    jrnj Member Posts: 407

    I’m in central by six flags. Hope you are starting to feel better. It takes a long time to heal. I had diep 16 months after mastectomy and that was brutal but gets better. Surgery pain is temporary. I have a harder time with the meds.

  • snm
    snm Member Posts: 50

    I'm so sorry. These surgeries are rough indeed but there is light at the end of the tunnel. I wrote about my journey "Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange". I detailed recovery. Hopefully you will find some comfort soon.

  • jonib
    jonib Member Posts: 85

    Hi - another Jersey woman. I was just trying to find a therapist or support group today as I have my third breast cancer diagnosis. Please send me a DM and let me know where in northern NJ you are located and I can try and provide some possible resources. You are not alone.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,630


    The op has not logged in to bco for over a year, but hopefully still reads and might see this.