Recurrence after bilat mastectomy?

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited January 2018

    Jada, I don't want to influence you, you need to make your decision about tamoxifen based on your own research and doctor discussions. I would lean towards taking it but it was never an option or decision I had much choice in. Tough call, but at this point I want everything that will possibly help keep this crap from coming back. I am lucky and have had very little side effect from tamoxifen. Everyone is different though and we have to do whats right ourselves. Hope your recovery is going well.

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2018

    I agree with Legomaster, but ultimately, you need to make the best decision for you.

  • slmdavidson
    slmdavidson Member Posts: 127
    edited January 2018

    Hi Jada,

    I agree with Legomaster and KBee. It has to be your decision. But I will share my situation because I think people need to know. I only had DCIS on the right but had multi-focal disease so there were multiple areas affected. I had a bilateral mastectomy and was told I was "good to go". Didn't need an oncologist and didn't need further treatment (this was 10 years ago). About a year and half later, I found a lump which ended up being stage 1 IDC. Personally I wonder if I would ever had that recurrence had I been taking some kind of hormonal treatment. After the recurrence I went on Tamoxifen, eventually switched to Arimiex and now back on Tamoxifen due to side effects from Arimidex. I have one more year of my ten years of hormone treatment but my Onc says the guidelines may continue to change and that they may find we would benefit from being on it forever. I feel lucky that I don't have any side effects from Tamoxifen. If I have to take it forever to prevent another recurrence, I am good with that.

    Keep in mind that when they do a mastectomy, it is impossible for them to remove every single breast cell. It only take a few cells left behind to create havoc once again.

    Take care and let us know what you decided! All the best to you.

    Laur

  • Jadalulu
    Jadalulu Member Posts: 57
    edited January 2018

    Thank you Laura for the information, I really was naive to the fact that I am still vulnerable to this cancer. I took my first dose of Tamoxifen this afternoon, I am going to try it and see how it goes. I want to try to prevent any recurrence, and if I have to take it forever that would be something that I would do to extend my life absolutely!!

    Thanks again for your reply, and for all of the suggestions from others.

    Jada

  • Trailrunner4
    Trailrunner4 Member Posts: 34
    edited January 2018

    I really appreciate you sharing your story. I too had a bilateral mastectomy and was having trouble understanding what you were saying. I thought how could you have a recurrence in the breast if you had a bilateral mastectomy, but then when you said it's impossible for surgeons to get every single breast cell, I understood completely. It took me about 6 weeks to start the Tamoxifen because I was dragging my feet, but I'm glad I did, especially if there is any chance of a recurrence. And mine too was multi-focal with 7 tumors in the left breast and 1 tumor in the right breast and both nipples involved. Yeah, I think it's a good idea that I stay on the Tamoxifen.

    Thank you again for sharing. I'm sure you're helping women (like me!) realize the importance of taking the hormone therapy.

  • slmdavidson
    slmdavidson Member Posts: 127
    edited January 2018

    Trairunner and Jada, I figure it can’t hurt to start the Tamoxifen and see how you do. You could always switch to something else if you are having side effects. If you are premenopausal you may have menopause type symptoms. Talk to your Oncologists about risks and benefits. I know it’s only 1-2% that have recurrences but when you are the “one” those odds don’t mean much. Give yourself the best chance to forever looking at the cancer experience in the rear view mirror. 💕. All the best to you!!

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited January 2018

    I agree slmdavidson, we've already been on the bad side of the percentages at least once. I really hope to be on the good side for a while. Good luck Jada. I hope your side effects are minimal.

  • Jadalulu
    Jadalulu Member Posts: 57
    edited January 2018

    Thank you, so far I’ve only experienced a slight tummy issue, although I realize SE’s usually take a little while to present themselves.

  • Geniebottle
    Geniebottle Member Posts: 2
    edited February 2018

    I am braca2 positive and have an extremely strong family history of breast cancer. I had bilateral mastectomy 10 years ago I was 29 when I was diognosed. My cancer was stage 0 DCIbut bc of the braca2 and family history I had really radical surgeries include hysterectomy, but no chemo or rad, or tomax. I have had a couple lumps over the last 10 years that based on ultrasound were determined to be scar tissue, but they haven't been biopsies. Over the last year or so I have started to have a lot pain in my armpit area and a few mo this ago I noticed another lump on my breast. I just assumed it was more scar tissue and have kind of ignored it. But the pain in my armpit is getting more frequent and more uncomfortable. After reading all your post I'm a little concerned that it may not be scar tissue and the pain in armpi might be a sign of it being in my lymph nodes too. I have a lot of medical issues and I just sick of dr and dr bills so I avoided going back in for this lump. I know how stupid that is. My mom had BC twice and passed away from colon cancer. All related to the braca2 mutation. But I just don't want to waste to the time and money to just hear it is scar tissue again. PLus it sort for feels like the drs roll their eyes when I have every lump checked. HAs anyone else had pain in their armpit? The lump is on my actual breast breast though.

    THanks for your input in ad

  • Seadish
    Seadish Member Posts: 17
    edited February 2018

    I say you need another dr ! all my drs are super cautious with my history however I do admit the surgeon is not an eye roller but maybe in secret he is! No one at this point in your game should take any concerns lightly and I am sure it probably is nothing but needs to be checked and prayers for you!! I too am seriously tired of all this and having had a number of my own issues yes I have frequent pains no lump this time we'll just weird node I know I'll be fine . I'm so sorry you are dealing with this but you are not alone my surgeon reassured me as he often has to that t muscle just hurt!...always,,,hope that helps

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2018

    I was worried about "crying wolf" because my former MO was such an ass, told me I was not at risk for recurrence, and was annoyed when I was concerned about a lump (and I was one to rarely call). When I had current MO (who is awesome and caring) check a lump that turned out to be scar tissue, I expressed concern abut not wanting to call for every little lump. He put down his pen, looked me square in the eye and said, "I would rather you call me every week about a lump than for you to ever ignore one, and I hope all lumps we asses are completely benign." That took so much anxiety away about calling. For sure get checked out. If your doctor rolls his/her eyes, find a new one. YOU are too important to have any concern dismissed.

  • slmdavidson
    slmdavidson Member Posts: 127
    edited February 2018

    AMEN Seadish and KBee!!! AGREE, AGREE, AGREE!

    Geniebottle, no one will care more about your health than you. You have to be your own advocate. Yes, recurrences after mastectomies don't happen "often", but they DO happen. Enough that, in my opinion, every lump should be checked to the patient's satisfaction. My Doctor also told me that if a worry was keeping me up at night, he was happy to do whatever to be sure we knew what it was. If you need to change doctor's then do. I would flat out tell them you want this evaluated and who cares if they roll their eyes. It's only because they haven't been put in that situation before. Praying that it is absolutely NOTHING and that you can find this out very soon. If it is cancer, you are going to be glad you didn't wait any longer. We are all here to support you.

    Take care,

    Laura

  • Geniebottle
    Geniebottle Member Posts: 2
    edited February 2018

    thanks ladies. I called the dr today and I have an apt tomorrow with an ultrasound. It crazy bc long before I had cancer my dr in my hometown was having checked every year and doing mri every other year bc he was so set on catching it earlier. And bc of my braca and my family history (my great grandmother, my grandmother, mother, both my mom’s sisters, and 3 cousins all had BC at least once before 40) so he was super careful about it but now I live in a small town and the dr here after I have had BC isn’t worried at all. So frustrating. Thanks for the push.

  • slmdavidson
    slmdavidson Member Posts: 127
    edited February 2018

    So glad you are getting in tomorrow for an ultrasound. Please let us know what you find out. If inconclusive, I would recommend you pushing for a biopsy, especially with your genetic make up. Praying for you!

    Laura

  • TessaW
    TessaW Member Posts: 231
    edited January 2019

    I had assumed that the same thing. It seemed logical. I mean how could you get breast cancer again if you no longer had breasts?

    Apparently it's more common then what you would think.

    I had my radical bilateral mastectomy January of 2014 and reconstruction March of 2014. May of 2018 they had found three cancerous tumors which had grown in the scar tissue.

    Go figure.

    I had those removed and then they found lymph nodes in my lungs that were growing exponentially. So then I had those removed from my lungs this past November.


  • Gillkath
    Gillkath Member Posts: 149
    edited January 2019

    Hi there, so sorry you are going through this! My original cancer was diagnosed in 2007, and I had a unilateral mastectomy with tissue expander and then implant exchange. My lymph nodes were all clear. I did chemo and years of tamoxifen. Tamoxifen caused uterine hyperplasia so I had a hysterectomy, too. Fast forward 11 years, and I find myself with a local recurrence to my side. Had surgery to remove that and subsequent 33 treatments of radiation. Now, my implant is failing due to the radiation and will be needing additional surgery in the future. I am also beginning Femara. Oh, I thought that I had finished this journeybut I guess it isn’t ever really over!

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    Sorry so many are in this boat. I agree that is much more common than they'd lead us to believe.

  • SSInUK
    SSInUK Member Posts: 245
    edited April 2019

    I had a mastectomy radiation chemo hysterectomy and Ferrara. Now I have the very sudden appearance of a big hard lump near my mastectomy scar only four weeks after a PET CT showed nothing in this area. Biopsy Friday. Terrified. If all those treatments didn’t work what have I got left

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2019

    I am sorry you are dealing with this. I hope they get you in soon. Hopefully it is something benign. If it is malignant, there are tons of treatments left. If it is ER positive, they often start with something like Ibrance (or Ibrance used in combination with something else). Keep us posted!

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited April 2019

    I'm sorry you're facing a biopsy again - I hope it's benign.

    Although no two situations are quite the same, I technically had two local recurrences, so I can understand your fears.

    Recurrences happens far too often, unfortunately. Hang in there, and let us know how you're doing if you have a chance.

  • SSInUK
    SSInUK Member Posts: 245
    edited April 2019

    Wow buttonsmachine you have had a tough tough time. I had the scan and biopsy today and there was an abscess. So good news it wasn’t a big solid tumour - but, they are puzzled about why there’d be an abscess there so are looking for tumour cells. Results in a week. Hoping it’s a weird anomaly. Thanks for choking on - and you KBee

  • slmdavidson
    slmdavidson Member Posts: 127
    edited April 2019

    Hi SSinUK,

    Saw you post and wanted to check in. Hoping you get results back soon, it sounds hopeful that it's just an abscess? I started this thread 11 years ago. I did have a local recurrence but since then, I am doing just fine. I pray you get good results. Take care and keep in touch.

    Laura

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2019

    Laura - This has been a very valuable thread. Thanks for starting it & following up.

  • Arya44
    Arya44 Member Posts: 54
    edited April 2019

    Sorry to hear of the recurrences and what so many of you are going through. Great thread. I'm following this as someone who had bilateral mastectomy recently because there was cancer in both breasts, and also because it gives me a sense of it not being able to come back if there are no breasts to come back in. I meet my medical oncologist in a few days to find out oncotype score and on one hand hope I don't need further medication or treatment, but see how even mastectomies can't get all the cancer cells.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2019

    Snowflake - I had a bilateral mastectomy for DCIS with clear margins. And 3 serial node biopsies on each side showed clean. No other treatment was recommended. I was just sure I was done with any future problems. Unfortunately 2 years later I found a lump under my collar bone that turned out to be IDC. My docs were all incredulous, but a micro "germ" must have escaped the original surgery (?) Ahhhh this damn disease.

  • Arya44
    Arya44 Member Posts: 54
    edited April 2019

    Minus Two-your case does sound so extreme, thinking you're done with this and two years later have a recurrence...and the new one was 5.5 cm? That must have been a huge lump, especially in such a small area like the collarbone. I'll keep this in mind if the MO says I need treatment...damn this disease indeed!

  • slmdavidson
    slmdavidson Member Posts: 127
    edited April 2019

    snowflake22,

    Definitely stay vigilant on your self exams even though you have no breast tissue left! Also good to check around your armpit area and collarbone are for any new lumps. Always improved outcomes when you can find it earlier rather than later!

    Minus two, hope you are doing well now!!

    Take care!

    Laura

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2019

    Laura - yes so far I'm still NED after the 2013 chemo/surgery/rads

  • mom2e
    mom2e Member Posts: 10
    edited April 2019

    Hi, Ingrid. Sorry you’re dealing with this. I was diagnosed last week, 8.5 yrs after my bilat mast (TRAM flap reconstruction). I found a lump under my skin in the same area as my previous cancer (and the one before that, in2004).

    I knew it was a possibility because of my last recurrence, which was 6 yrs after lumpectomy, rads and tamoxifen. My lymph nodes were neg in 2004. Also in 2010. All three were ER+, PR+ and HER-. I took Letrozole (horrible SE) for 5 yrs after 2010 diag.

    I will be scheduling a lymph node biopsy (on the other side! Showed up on CT scan - wtf), hopefully next week. Also checking high lymphocytes (?). Hoping for a treatment plan soon. Trying to manage anxiety. Helps to know I’m not alone even though I hate that anyone else is going through this too.
    Best,
    Jodi



  • KBeee
    KBeee Member Posts: 5,109
    edited April 2019

    Hopin gyou get your plan in place soon, nad that all other scans have good news results.

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