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Topic: recurrence after mastectomy

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jul 27, 2021 01:16PM

daenerys30 wrote:

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.


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Jul 27, 2021 01:42PM moth wrote:

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

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jul 27, 2021 01:52PM SpecialK wrote:

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!

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jul 27, 2021 01:55PM star2017 wrote:

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.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 27, 2021 10:07PM Tmh0921 wrote:

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

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/21/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/31/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/15/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/7/2021 Femara (letrozole)
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Jul 27, 2021 10:31PM TB90 wrote:

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.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/17/2013 Mastectomy: Left Radiation Therapy 2/19/2014 Breast
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Jul 28, 2021 05:36AM Rah2464 wrote:

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.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 28, 2021 08:41AM Mudstick wrote:

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.

Dx at 43 (2018) with multi-focal IDC (1.7cm largest) + microinvasive DCIS 7.5 cm. LVI + Positive Anterior Margin for DCIS. Oncotype Score = 14. Local Recurrence February 2020 Dx 9/2018, DCIS/IDC, Right, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 10/11/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Hormonal Therapy 12/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/2020, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 28, 2021 08:52AM Serendipity09 wrote:

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!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Jul 30, 2021 07:19PM - edited Jul 30, 2021 07:19PM by edwards750

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.

Diane





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Jul 30, 2021 10:10PM judymc1 wrote:

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

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Jul 31, 2021 12:34AM obsolete wrote:

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

https://www.newswise.com/articles/femara-helps-pro...

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Sep 14, 2021 09:33AM BSandra wrote:

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...

Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary
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Sep 14, 2021 10:33AM - edited Sep 14, 2021 11:03PM by Serendipity09

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.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 14, 2021 08:17PM blue22 wrote:

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!

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Sep 15, 2021 12:19PM GraceB1 wrote:

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.

Grace B I'm just special - primary neuroendocrine, less than .001% of all breast cancers. Start each day with gratitude. Dx 6/10/2013, Right, 6cm+, Stage IIIA, Grade 2, 2/11 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 7/12/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/8/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Targeted Therapy 2/12/2014 Herceptin (trastuzumab) Radiation Therapy 3/4/2014 Breast, Lymph nodes Hormonal Therapy 5/18/2014 Arimidex (anastrozole) Dx 1/29/2020, Right, <1cm, Stage IA, ER+/PR-, HER2- Hormonal Therapy Femara (letrozole)
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Sep 15, 2021 12:28PM Yogatyme wrote:

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.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Sep 17, 2021 12:50PM - edited Sep 17, 2021 12:52PM by Digezy

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.

Dx 5/3/2021, LCIS/DCIS/IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)

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