Topic: Reoccurrence after bilateral 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: Jan 11, 2023 09:05PM

Posted on: Jan 11, 2023 09:05PM

jan381 wrote:

In June 2020, I was diagnosed with hormone negative, her2+ IDC breast cancer. I received TCHP before a lumpectomy, followed by radiation and 12 cycles of Herceptin. In August, 2021 I was considered in remission. Then in January 2022, I was diagnosed with IDC, triple negative, inflammatory breast cancer. I had chemotherapy again, TC + keytruda and then AC + keytruda before my double mastectomy. I had my double mastectomy in August, had some complications with the expanders and eventually had them removed, then in November I started having skin nodules pop up, the first one was right under my scar and then I had about 8 with in a few weeks, they biopsied them all and resected a wound that wasn't healing as well and they all came back as Triple Negative IDC breast cancer. They are having me start chemotherapy again on Friday, then radiation and chemotherapy afterwards.


Has anyone been through this before? I think this is considered regional reoccurrence but not sure, still shocked and overwhelmed.

Much Love,

Janet

Dx IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2+, ISH, IHC Dx IDC/IBC, Right, 1cm, Stage IIIA, Grade 3, ER-/PR-, HER2-
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Jan 11, 2023 09:43PM wrenn wrote:

Janet, I have not been through what you are dealing with but just want to say that you have been through so much in such a short time. It isn't fair.

This site used to be amazing for help and information and comparing situations but it kind of went downhill last year so you may not get many responses but it is worth sticking around because the people who are still here are very kind and will help.

Take care of yourself and I will hope for more responses for you tomorrow. xo

Triple Negative Metaplastic. I had one dose of Cytoxan/Taxotere and was then cut off due to complications. Surgery 8/16/2013 Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Simple; Mastectomy (Right): Simple
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Jan 11, 2023 10:44PM moderators wrote:

Jan381, we are so incredibly sorry to hear about what you've been through and what you continue to go through. That is so much to deal with in such a short amount of time, it must be so very overwhelming.

This community is wonderful source of support, and we're all here for you. Our Triple Negative forum is a great place for more information, and we also offer virtual meetups for members to connect with one another outside of the forums, in a different setting. You can see our schedule of meetups here: https://community.breastcancer.org.

We hope you find the support and encouragement you need here, we're here with you every step of the way.

The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Jan 12, 2023 03:35PM melbo wrote:

Wow. That is awful and I’m sorry you have been through so much. I don’t have any insight for your question, but you have my sympathy and I hope that you can get it kicked to the curb once and for all

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes
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Jan 12, 2023 05:54PM lw422 wrote:

Jan--sorry for the difficult time you have had, certainly more than your share. I'm curious about the tissue expanders after inflammatory BC treatment. The IBC Standard of Care is chemo, rads, then mastectomy with ALND. There is no reconstruction for at least a year after treatment is complete due to the high recurrence rate of IBC. Have you had all treatments at the same facility/doctor(s)? (I am not criticizing your care or providers; just wondering why the IBC SoC protocol wasn't followed.) I have TN IBC and am currently NED after pCR in 2021.

I hope your treatment goes smoothly and you're finally able to get off this stupid cancer merry-go-round. My very best to you, and let us know how your treatment goes.


Dx IBC, ER-/PR+, HER2-
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Jan 12, 2023 07:58PM jan381 wrote:

I appreciate your response, I didn't get radiation because I had it the first time, but they hadn't mentioned an issue with getting expanders right after mastectomy for a DIEP flap would be a concern. But after everything I have read about in the past few weeks have me understanding it now. I am currently in the process of getting a second opinion from a more specialized doctor after all of this now.

I appreciate all the support I have gotten on this thread thus far and I will continue to update.

Many Thanks,

Janet

Dx IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2+, ISH, IHC Dx IDC/IBC, Right, 1cm, Stage IIIA, Grade 3, ER-/PR-, HER2-

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