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August 2021 Surgeries

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  • BCinfoseeker
    BCinfoseeker Member Posts: 31
    edited October 2021
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    Good to see most everyone healing well and while lingering annoyances are still there, they seem to be resolving.

    My saga has taken the bad path. After getting a bit of a lecture from the RO, I ended up having a PET scan to see if there is lymph involvement and sadly there is. Three nodes for sure, and who knows, maybe more. The good news is that lefty is clear as is the rest of my body. In meeting with the surgeon, we immediately agreed that I’d get a BMX. I’m now wondering if I made that decision in haste, and maybe further surgery on righty is possible without losing them. I’m meeting with my MO tomorrow and I’ll make the final decision. I also have met with a PT and I have great confidence in her - that post surgery I’ll be able to ride and keep living the way I want. While I’m making an appointment with a plastic surgeon, I’m leaning aesthetic flat closure with a tattoo to come later.

    It’s been a crazy roller coaster. BMX is scheduled for 11/17 so I’ll be joining another surgery group - booyah. I have no idea yet about chemo, radiation or AIs though I suspect I’ll get at least two of them. More waiting, sigh.

  • Aklynna
    Aklynna Member Posts: 28
    edited October 2021
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    BCinfoseeker- I am so sorry to hear your diagnosis has taken a turn down the wrong path. That would be a tough decision to make for sure. Without being in your shoes, I would say that my 1st instinct would also be BMX. Just get everything done at one time. Hopefully further discussion with your MO will lead you to a decision that you are comfortable with.

    ((hugs))

  • lw422
    lw422 Member Posts: 1,399
    edited October 2021
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    BCinfoseeker--sorry about the lymph node involvement. Making the mastectomy decision is definitely hard, and a very individual thing. When I was first diagnosed I wanted a double mastectomy but my SO discouraged it due to my IBC. They wanted to make sure the cancer side healed with no issues so I could move on to rads ASAP. I was disappointed at that time, but after having the surgery I'm actually glad I don't have to deal with the tightness and sensitivity on both sides; it truly is maddening at times.

    Also, the lymph node dissection was definitely the hardest part of my surgery, but I had 2 levels of nodes removed (32 of them!) NONE of them was positive for cancer. The nerve pain and feeling of something wadded under my arm makes me crazy(er).

    Good luck with your decisions; it seems that none of them are easy to deal with.

  • BCinfoseeker
    BCinfoseeker Member Posts: 31
    edited October 2021
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    Aklynna and LW422 thank you for your kind words of encouragement. I am back to thinking BMX is the right way; the RO with his lecture basically told me that my lot was cast when I was dxed with multi-focal IDC. It can recur easily in the same breast.

    Taking lefty is my choice; but the surgeon seemed to really want to dig around in the lymph system there to ensure that there's no cancer. *sigh* no easy answers for sure. Off to the MO appointment :)

  • lw422
    lw422 Member Posts: 1,399
    edited October 2021
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    Hello everyone. How are your recoveries going? I'm still struggling and wondering if I will ever feel "normal" again. I'm almost 7 weeks out and somehow I thought I'd feel a lot better by now. I started radiation last week and so far, so good.

    Under my arm still feels tight and horrible from the surgery, like I have a thick "sling" of something under there or like I'm wearing a bra that's far too tight, even when I'm not wearing one at all. It still feels raw and sore and TIGHT, though from the outside appearance it has healed well.

    I also have a lot of sensitivity and burning nerve pain, so I'm miserable a lot of the time and worried that the radiation will make me feel worse. :crybaby:

  • pamep
    pamep Member Posts: 66
    edited October 2021
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    LW422: Sorry to hear that you have are still suffering surgery effects. It is unfortunate that you had to go through all those lymph node procedures and then find out that you had no lymph involvement. Myself, I sometimes get twinges of pain and/or tightness at the incisions sites but am ready both physically and mentally for the next steps in this BC "sh**t-show." I am waiting for my Oncotype DX test score to come in next week to rule out chemo before undergoing radiation treatment and anti-estrogen therapy.

    I thought today's Moderators' posting of "Long-Term Side Effects Reduce Quality of Life Years After Cancer Diagnosis" under Research News was telling. It should be posted in the Steam Room.

    In the meantime I am reading "Breast Cancer: Beyond Convention" and "The Emperor of All Maladies: A Biography of Cancer."

    Thinking positive thoughts for everyone diagnosed with breast cancer.

  • lw422
    lw422 Member Posts: 1,399
    edited October 2021
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    Hey Pam. Thanks; I hate to whine but I think it's important for us to share so that anyone reading the threads can get a realistic picture of how this stuff goes. I guess misery loves company and helps us to realize that others are having similar symptoms, and hopefully to learn that there is an end in sight!!

    I hope you can avoid chemo. I'll keep my fingers crossed for you. Have a great weekend.


  • janewhite
    janewhite Member Posts: 49
    edited October 2021
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    Good news: My problem wound is finally really healing. For 8 weeks, no progress, and then over the past week, about half of it has closed!

  • wondering44
    wondering44 Member Posts: 260
    edited October 2021
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    @LW422

    Hey Lady! I am sorry to hear you are still having post-op struggles. The underarm is a tough one. Mine still is sore at times. My entire arm is sensitive to the touch. So weird! My breast is finally healing. I took the bandages off this weekend. Still a work in progress, though. I didn't realize before the surgery the toll or extended timeframe it would take on the body and mind. I don't know why I thought "one and done" would be over in a couple of days?!!!

    I hope you get better sooner than later. I am sending warm thoughts your way and wishing you a speedier recovery.

  • lw422
    lw422 Member Posts: 1,399
    edited October 2021
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    JaneWhite--hooray! That is great news; I'm so glad your wound is healing. That must feel so good!

    Wondering44--hey Chickie! Thanks for the support; I seem to do more than my share of whining lately. I'm so happy to hear that you got the bandages off and things are healing well. I think most of us have been a little blindsided by how long things take to heal and feel better... we just want to feel normal. Take care and keep posting updates so I can keep up with you. Good thoughts and hugs back to you.

  • tbluhm74
    tbluhm74 Member Posts: 3
    edited October 2021
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    I decided to get a bilateral mastectomy in May 2021. I have an ATM mutation which puts me at a 15-40% chance of getting breast cancer. I also found out that my insurance would not cover the preventative screenings I would need (which were recommended)--MRI annually and mammograms annually. That sounds simple enough except MRI for me were going to cost $1200 a year. Who wants to pay that much for boobs? They would end up becoming quite pricey. Since I was already small breasted, with the support of my husband, and digging real deep to think about who I was and what I value, I decided to get a bilateral mastectomy without reconstruction. It has been the best choice I have ever made. I made sure I was comfortable with the surgeon (good ratings) and then jumped right in. Between finding out about my mutation (Feb 21) and getting the mastectomy, only 3 months past...I am happy with my choice. I'm flat and sleek. I am currently training for a marathon and having no boobs is pretty nice---nothing to bounce around. Also, an incredible peace of mind with not having to spend a life being screened. Best, best, best choice ever. I do not wear prosthetics, only a padded bra...it looks just fine...no-one even notices I am flat. I want to put this story out there because it was such a big choice before doing it and it really can work out just fine physically, emotionally and mentally. I am numb in the chest area but no other side effects.

  • moderators
    moderators Posts: 8,057
    edited October 2021
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    tbluhm74 thank you for sharing your experience with your decision for a double prophylactic mastectomy. Please feel free to share also in this forum, where it may be more helpful to the readers: High Risk for Breast Cancer.

    Hi to Everyone else here on the thread too ! Medicating

  • lw422
    lw422 Member Posts: 1,399
    edited October 2021
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    Any of the August surgical group still around? How is healing progressing for everyone? I'm still having the maddening tightness along the scar and nerve pain weirdness in my armpit. Hope this crap will resolve itself at some point. I saw a PT this week and got some new stretches and a myofacial release massage that "hurts so good." My range of motion is excellent so I guess the stretches are helping.

    I'm currently done with week 4 of 6 weeks of radiation. So far, so good with that.

    I hope all of you are progressing well and feeling good. Not sure where you are in your treatment, but if you're on to chemo or rads I hope you're not having a bad time of it. Hang in there and let us know how it's going.

  • wondering44
    wondering44 Member Posts: 260
    edited October 2021
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    Hi @LW422!

    Sorry to hear you are still having problems from surgery. That armpit pain was brutal. I can only picture the amount of pain you have with a large number of nodes taken out. Ouch!!!

    My healing in October has been good. A little sore below the armpit next to the boob. I have adjusted to the new scars. I'm still working on the different-sized boobs adjustment—such a difference it makes in clothing. Luckily I wear a lot of t-shirts to work. Friends and family say they barely notice it. I know it is a nice thing to say to a person. Am I allowed to answer back, "whatever?"

    I start radiation tomorrow. Six weeks/30 rounds. Crossing my fingers I won't get tired.

    Today marks the end of Breast Cancer Awareness Month. I've been wondering all month why I don't see the word "fear" tied to education about breast cancer or have yet to hear a doctor say that word. Is it still taboo to say you are afraid? Getting diagnosed with cancer was scary as hell for me.

  • lw422
    lw422 Member Posts: 1,399
    edited November 2021
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    Hey there Wondering; it's so nice to "see" you. Glad that your healing is going well. How did your first radiation treatment go? I'm on week 5 and so far, so good.

    I totally get it on the uneven boob thing... I have a D on one side and nothing on the other!! I need to get fitted for a prosthesis but I'm in the middle of radiation treatments and not inspired to try on bras and silicone.

    Ah yes... the emotions of cancer. Fear, anxiety, depression, etc. Once we hear those words our lives change forever, and not in a good way. I'm glad to get the gift of a few more years but it was a hefty price to pay... and will likely continue to pay for years to come. Thankfully we got to meet some great kindred spirits along the way so we had good company here and don't have to walk this path alone. I appreciate all of you so much, and wish the very best for you all.

    Take care of yourselves and keep in touch.

  • lw422
    lw422 Member Posts: 1,399
    edited December 2021
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    Hellooooo to any of the August '21 surgical sisters still around! I hope you're all continuing to heal and enjoying the holidays. I'm so happy to say that I'm finally feeling pretty good; most of the tightness and nerve weirdness has calmed down, and I'm no longer a walking blob of misery.

    I've even contacted my BS to discuss prophylactic removal of Louise since Thelma is sitting in a laboratory specimen jar these days. I'm not enjoying the uniboob thing but we'll see how it goes.

    Happy holidays, everyone.


  • wondering44
    wondering44 Member Posts: 260
    edited December 2021
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    LW422,


    I am doing great, and I am about to finish up rads. I am starting my last week plus two days next week. I have another CT this morning. My BS told me Friday I will need to postpone reconstruction for six months due to radiation damage. I don't see the damage or feel it minus a nice tan on my right breast. If reconstruction is postponed to allow more healing will make the surgery more successful, I am good with it. Other than brain fog, I have not had any issues.

    I did pick up my cancer car this weekend. She is beautiful and fast. What a ride!

    Tell Louis to get busy meeting up with her partner in crime. No need to hang around all by herself.

    I hope everyone is doing well.

  • lw422
    lw422 Member Posts: 1,399
    edited December 2021
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    Hey Wondering! Congrats on being almost done with rads! I also had an easy time with radiation; no broken skin or blisters. Weirdly my skin got redder the week after I was done with treatment but never did hurt. Under my arm peeled but the new skin was not raw or sore.

    My SO also said I'd have to wait on prophylactic mastectomy for 6 months. They want to give the skin time to recover for the best surgical healing, which makes sense. I'm still thinking on that but right now I'm leaning toward "totally flat." It's so appealing to think of never wearing a bra again!!

    You got a new car!!?? WOW, congrats girl! Enjoy and drive carefully.

    Hope everyone is doing well and healing. Take care, all.

  • janewhite
    janewhite Member Posts: 49
    edited December 2021
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    19 weeks later, my dehiscence still hasn't completely healed, but it's much smaller than it was. Another month, maybe?

    A few weeks after the surgery, when I first faced the fact that I was dealing with a complication that would take months to heal, I felt utterly overwhelmed. But I've learned to live with it. I found dressings that protect the wound and keep me comfortable, and I just go on.

    I'm pretty sure I'm going to get my remaining breast removed, maybe as soon as next summer. Partly because I don't like living with one breast, partly because, well, the world gets more uncertain every day, and if I can reduce my risk of breast cancer from 15% down to less than 1%, that would do a lot to protect my future and my family's future.

  • lw422
    lw422 Member Posts: 1,399
    edited December 2021
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    Hey Jane. Glad to hear that the wound separation is healing well. I feel the same as you about the prophylactic mastectomy; it's more annoying having one (D-cup) boob than I anticipated. I'll be meeting with my surgeon in May to discuss the surgery.

    I hope everyone is doing well and having a great holiday season.

  • Aklynna
    Aklynna Member Posts: 28
    edited December 2021
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    Hi ladies! Hope everyone is moving g along in the healing process. I successfully completed radiation early in November and things were going pretty good. Didn’t really have any SE during radiation except tiredness. Now, over the last week or so I’m having pain and tightness under my arm and in my chest similar to post surgery. I’m still fighting with insurance to make sure the original PT bills were processed correctly and don’t want to rack up more $$ until that happens. Just can’t figure out why the pain has started up again :(

    Also wondering if/when I’ll be able to wear regular bras again. I know many have it much, much worse than I do. I just wasn’t expecting a 5mm tumor to have such a lasting impact!

  • lw422
    lw422 Member Posts: 1,399
    edited December 2021
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    Hey Kristy. Sorry to hear that you're having pain and tightness again. I also finished rads in November and things have gotten a little better but I never feel "good" anymore. The tightness, numbness and nerve pain just seem to be never-ending. It gets pretty depressing, actually. I keep thinking that it will "just take time," but dang... it's been 4 months already. I wish I had some advice or positive words for you.

    I had a single Mx and I'm still having bra issues, especially in the armpit on the surgery side. I don't know how long that will take to get better.

    I hope someone sees your post that has more positive things to say. I feel like I'm not helping much except to say, "me too!" Take care and I hope things get much better for you soon. Happy New Year!

  • janewhite
    janewhite Member Posts: 49
    edited January 2022
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    My unhealed incision finally healed! First time in 5 1/2 months, no dressing today! Happy dance!!!

  • lw422
    lw422 Member Posts: 1,399
    edited January 2022
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    Hey Jane. Glad to hear that your wound is finally healed; that must be a great feeling. I can't believe it's been 5 months since my mastectomy; I have good days and not-so-good days. I suppose the tightness and discomfort are my "new normal."

    My first followup visits with my MO and PS are in 3 weeks. I have a lot of questions for the surgeon but I'm pretty sure there's nothing to be done about the 'iron bra.' Seems that surgeons are too focused on removing cancer and not concerned enough about the suffering that they cause a woman for her lifetime.

    I hope everyone is doing well.

  • Aklynna
    Aklynna Member Posts: 28
    edited January 2022
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    Good news Jane!

    LW - I am in the same boat in the recovery process. I went to see my RO last week because my rib cage on the radiated started really hurting. He didn’t see anything concerning and said it is probably just scar tissue from all of the trauma my body has gone thru. I feel the exact same about this just being my new normal…

    I also decided to move forward with genetic testing. Had the blood draw last Friday, will have results in 2-3 weeks.

    And I have a follow up with the MO next week to revisit hormonal therapy.

    Hope everyone else is doing well.

  • lw422
    lw422 Member Posts: 1,399
    edited January 2022
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    Hi again, Kristy. Hope you're doing somewhat better these days. Seems like I have good days and not-so-good days. I've been doing a lot of reading in the lymphedema section and thinking that I might have truncal lymphedema. I don't have any swelling in my arm, but the weirdness under my arm and around my mastectomy scar make me wonder. Seems like the "edema" in that area has never completely resolved since surgery and kind of migrates around.

    I might call to see if I can get in with a lymphedema therapist soon to be evaluated. I hate to think that this might be LE but if it is I need to get started on some treatment. Hope you and all the August '21 Sisters are doing well.