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recurrence after mastectomy

daenerys30 Member Posts: 10

I was diagnosed with a stage 2 hormone receptor positive tumor in Feburary 2020. I had a right side mastectomy and was supposed to take tamoxifen to prevent cancer in the other breast. I started taking it but stopped because I was afraid of the side effects and that I would have to switch from Fluoxetine to another antidepressant and Fluoxetine basically saved me and I've been on it for over 10 years. I though I had a greater change of dying from depression than cancer. I noticed a lump on the side that had the mastectomy and found out I have cancer in the tumor and lymph node under my arm pit. I feel like I did something wrong to have this happen again. I thought the mastectomy was the end all of cancer on my right side. I kept the nipple and wonder if this is the cause as well. I feel so guilty about not taking the tamoxifem, not following up with the oncologist it is eating me up. I feel like such an idiot and screw up. I see my oncologist on Thursday and don't know yet if this is the same cancer. This guilt is eating me up inside. I keep going through the "what if I did.." over and over again. I don't know how to move past this.


  • moth
    moth Member Posts: 3,293

    Hi daenerys30, I'm sorry you're experiencing this all over again. So much of cancer is just sheer bad luck. And you made the best decisions you could with how you were feeling and based on your circumstances then. Let the past be and just take it one step at a time. When you see your onc on Thursday you will know more and things will get better.

    There are other ladies here who had recurrence post mastectomy. The risk is low but it is not zero. Sorry you find yourself in that small group.

    Can you try to line up a counsellor or someone to talk to? Telehealth is easy... talking this through with someone might be helpful. Perhaps your cancer center has some resources?

    best wishes

  • specialk
    specialk Member Posts: 9,211

    I am so sorry you find yourself in this situation. Here's the thing - this could have happened even if you took the Tamoxifen. You will never know, so you need to stop beating yourself up about it because it accomplishes nothing other than to make you feel bad. That is hard to do, I know. You can't change the past. It is equally important that you also realize you can't control the future either, but you can certainly take lessons learned and apply them with an eye toward living with less regret. Focus on right now - deal with what you do know, and move in the direction of addressing the current problem. I think that will help you feel proactive and allow you to lessen any guilt you are feeling. Wishing you the best, and sending you support. I'm sure many others here do as well! Hang in there!

  • star2017
    star2017 Member Posts: 370

    It's not your fault you got cancer. It's a terrible disease, and I'm sorry that you (and all of us) have had to deal with it. Wishing you comfort and health.

  • tmh0921
    tmh0921 Member Posts: 518

    Cancer is a crap shoot, we make decisions that are the best for us given our circumstances. You did nothing wrong. I was diagnosed with my second IDC (Stage IIA) while taking tamoxifen, and the tumor was highly ER+/PR+. For me, the tamoxifen didn't work. I wouldn't beat yourself up over the “What Ifs", you can't change the past. Focus on the path forward.

    I'm sorry you are finding yourself facing this again

  • tb90
    tb90 Member Posts: 279

    Daenerys30: Having had cancer and depression, I would rather have cancer. When I was in the worst depression ever, I thought dying of cancer would be a relief. I hope no one finds this offensive. You made the best decision for you at the time. I have since been treated for both and know there is hope for both diagnoses while bc remains early stage. Depression is fatal too often. You can fight both simultaneously but need to share with your treatment team. You shouldn’t have had to choose. But I totally get your choice. Now be kinder to yourself and be treated for both. You did nothing wrong. You deserve none of this. But you now deserve relief from responsibility and the best damn treatments available.

  • rah2464
    rah2464 Member Posts: 1,192

    Daenerys30 this absolutely isn't your fault. You made the best medical decisions you could, period. Mastectomies can fail to get all the necessary tissue removed. Cancer can recur even with medications. Please be very open with your medical team about your need to stay on your anti depressant, they will a treatment plan that supports all your needs. I am so, so sorry you are having to fight again.

  • mudstick
    mudstick Member Posts: 53

    Daenerys30 - I'm so sorry to hear what you are going through. I'm sure you are in shock and feel like the earth is shattering around you :-(

    Please take heart that this is not your fault. If it helps you to hear stories of others - I took the Tamoxifen. And ended up with a recurrence on my mastectomy side, regardless. It remained highly hormone positive.

    While you are in this dark place, please try to be kind to yourself. Let your healthcare providers know how much you are struggling and get the support you need to move forward, even if its only minute to minute or day by day. You don't have to be strong.

  • serendipity09
    serendipity09 Member Posts: 769

    Daenerys30, I believe I responded to another one of your posts recently. It’s not your fault. I was just diagnosed with a recurrence and it’s devastating news to receive. I, like you, questioned myself as I stopped taking Xeloda only after three cycles as I was in constant pain. Had I finished my complete treatment would I have cancer again? Probably. It’s crappy and not fair to any of us that we have BC. My best advice to you…stop beating yourself up and be kind to yourself. Wishing you the best of everything!

  • edwards750
    edwards750 Member Posts: 1,568

    Breast cancer - the gift that keeps on giving. Ugh. I have been lucky and blessed. I will be 10 years out next month.

    My sister had a MX and her breast cancer came back twice at the MX scar. She took Arimidex. The first time was two years out and the second time the fourth year so you never know. Cancer has a mind of its own no matter what we do.

    I know ladies who quit taking Tamoxifen and are many years out from their DX.

    I took Tamoxifen for 5 years but I didn't have the debilitating side effects some women have had. Quality of life is important too. In my case I was just afraid not to take it.

    You can do this. Keep the faith and keep us posted.


  • judymc1
    judymc1 Member Posts: 3

    Please don’t feel as if the recurrence is your fault. I had a mastectomy, did not need chemo according to the Oncotype DX test, took arimidex for the full time, and had a recurrence along the scar after eleven years. I questioned if I should have had healthier habits. My oncologist emphasized the capriciousness of cancer. You made the best decisions for you at the time. Maybe you will do some things differently this time but don’t beat yourself up over bad luck. Good luck- there are lots of good treatments available

  • obsolete
    obsolete Member Posts: 333

    It's really nobody's fault because "medicine is imperfect", said my doctor. It's hoped you'll find comfort in these words. Also, Dr.Paul E. Goss had claimed:

    "More than 50% of breast cancer recurrences and deaths occur five or more years after completing tamoxifen treatment."

    -- Goss PE, Ingle JN, Pater JL, et al. Late extended adjuvant treatment with letrozole improves outcome in women with early-stage breast cancer completing 5 years of tamoxifen. J Clin Oncol. 2008

  • bsandra
    bsandra Member Posts: 983

    Dear all, I posted this in another thread already but... are here any members that had recurrence in mastectomy scar? My Sandra got a small wound ~5x5 mm ~two weeks ago exactly in the middle of mastectomy scar, after lifting things, and we thought, uhh, it is a fresh scar, so maybe something "broke" and some small infection set in - no other symptoms. Then on Sunday it appeared again after a long hot day outside, and got bigger today. Our family doctor had a look at it yesterday and said "it is nothing" and changed the dressing, but today it looked bigger (like 15x10 mm but not deep) and so we went to our surgeon for an "emergency" check-up. He said ,,hmm... no lumps, no redness but we cannot rule out anything knowing how non-standard your disease is, so we must make sure what happens there". He sent us home and gave us means for wound-care. And so, now our MO is ordering a full body CT scan and a biopsy... dear God, out of blue sky... Has someone probably gone through something like this or heard anything? I am so sick and tired of this disease...


  • serendipity09
    serendipity09 Member Posts: 769

    Hi Saulius!

    I was dx'd March 2020, had my last chemo in Aug 2020, had my double mastectomy in Sept. 2020. In Feb. 2021 I found a small bump at the end of my scar, I thought it was a suture that did not dissolve, it looked like a blemish. ALL of my doctors thought the same and told me to keep an eye it. there were days that it was smaller and days that it would get inflamed. It was finally excised in July 2021 during my exchange to implants. It was indeed a recurrence. It's very smart of her doctor to not let it go and have her checked. My scans, thankfully, came back clear and it did not spread and it was a local occurrence. My doctors were surprised. Lumps and bumps along the scar are common, but it's best to be safe. I hope and pray that it turns out to be nothing for Sandra.

  • blue22
    blue22 Member Posts: 172

    Hi Saulius!

    My MO always checks my scar, and more than once she has seen a recurrence in other IBC patients in the scar line.

    Hopefully this is nothing, but at least if it is you probably caught it early!


  • graceb1
    graceb1 Member Posts: 56

    I had a recurrence right on my MX scar 6 months after I stopped taking Femara after 5 years on it. At first I thought I had poked my breast out in the garden and bruised it but it just didn't go away. The PA wasn't concerned but 6 months later the BS did a biopsy and it came back positive. She said she'd never seen anything like it. The scans were all OK so I just had a lumpectomy and put on Faslodex. So far, so good.

  • Yogatyme
    Yogatyme Member Posts: 1,793

    I’m so sorry about your recurrence. You are getting good advice here and always remember….cancer is sneaky and has a mind of its own. This could have happened regardless as witnessed by some of the other posts. Take good care and don’t beat yourself up.

  • Digezy
    Digezy Member Posts: 6

    hi. I had a nipple sparing mastectomy only on my right side (6/24/21). Ends up there was a small tumor not found on my MRI and the margins were positive. 10 days after my mastectomy I was in surgery to have my “nipple and areola complex" removed. I have been on Prozac and Wellbutrin for 10 years. I am being allowed to stay on the Wellbutrin since it is an NDRI but had to stop Prozac immediately. I've been switched to Effexor, an SNRI, but have only been on it for a month. The switch has definitely affected my depression. Your tumor was in the mastectomy side? Is it near the nipple? I'm so sorry. I started Tamoxifen about 1 1/2 months ago. Im 52, but apparently not in menopause.

  • kristifromsandiego
    kristifromsandiego Member Posts: 15

    Wow it has been years since I was on this sight but I read all these posts and it is heart shaking. I too was gardening in May and thought I sprained my arm: 5 MRI's, one CT and PET scan and I have breast cancer again after 14 years. I am devastated. A treatment plan is not in place yet, I see doctors this week. I feel so lost. Haven't told my kids yet. The pain is in my arm pit and I do not know if it is operable, but it is causing so much pain. I was never in pain from the original breast tumor (just the treatment). Just not sure if they can operate on a tumor that has encased the nerves under the arm pit? Anyone else have arm pit breast cancer. Its not a lympth node. Also not sure if this is the right place to post this?

  • parakeetsrule
    parakeetsrule Member Posts: 605
    So sorry you're back here again. This thread has not been active for over a year so you may want to start a new one. Are they considering this Stage 4 cancer? If so, you can post in that forum:
  • edwards750
    edwards750 Member Posts: 1,568

    So sorry you are might be dealing with this beast again. Just isn’t fair. FYI I had zero pain with my BC but my sister had constant pain. Everyone is different.

    Keep the faith and keep us posted.