Invasive Ductal Carcinoma with Lobular Features

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I was diagnosed with Invasive Ductal Carcinoma with Lobular features. When I was diagnosed, I was stage two. They started me on Chemotherapy as the first treatment. During that time, within the next month, bone metastasis showed up on that scan. Back in May, there was no metastasis. Next, I had opted for a double mastectomy, as there was a micro slow growing tumor on the right side. After that, they started me on hormone therapy and finally radiation. I was hoping other people would share with me the plan of action laid out by their Oncologist. I'm ER/PR positive. I was wondering what plan of action others received with the same diagnosis as I had in the beginning? I resisted chemo-therapy treatment so I was wondering if this happened to anyone else and what treatment plan did your Oncologist plan put you on.

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  • beep7bop
    beep7bop Member Posts: 130
    edited November 2020

    sounds like mine but they then called it invasive mammary cancer, had double mx, but six months later had a small mass turned out to be fat narcosis, then another mass which they just check again in September, still wait and watch and they found another one checking both again end of December. My blood calcium levels were up so I was sent for parathyroid ultrasound, they have now found a cystic nodule on the mid left thyroid, watch and check again in six months. This is all going to drive me nuts!! Not to mention I have a small GIST tumor in my stomach they have been on a watch and wait pattern. I think they're just waiting for me to die. How can one person have so many wait watch to see if it grows. Not so funny thing is when they finally decided I had cancer, I had been seeing the breast cancer doctor for at least 20 years with on and off scares which led to biopsy in my right breast and they found cancer in the Left first then when I went for double mx they found out it was in right also. I had asked for double mx ten years earlier but insurance wouldn't cover it. I am on pill to reduce ER/PR levels, no radiation or Chemo. But I am in my 70's .

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2020

    Sassafrassy - I would suggest you fill out your details so they appear in your posts below the line - that will help people understand more easily what treatment you have had and what you are on now. And I would also encourage you to check out the bone mets thread, as well as the corresponding thread for whatever drug regimen you may be on now (Ibrance?). There are several ILC ladies on there who may have input as to how ILC works, in addition to all the IDC gals.

    Also, to note, you may have been Stage IV from the start, there are quite a few ladies in the Stage IV threads where they were Stage II to start and then the mets were found at rads planning, or scans for another condition, after they had started chemo treatment. Without knowing more about your specific chemo regiment, it does sound very 'by the book' standard procedures, however - though the ladies who went through a similar path will know more.

  • Sassafrassy
    Sassafrassy Member Posts: 9
    edited November 2020

    I'm so sorry you are going through this. A lot of the scans done over a year and a half show metastasis, but nothing was ever done about it. What bothers me is he left me on a hormone therapy pill that obviously has not worked since he put me on them in December, scans kept coming back with more mets. He finally ordered a biopsy in August which showed stage 4 and was still going to leave me on arimidex while adding I-Brance to the equation. This just makes no sense to me. I got a second opinion and she suggested another hormone therapy, Flasodex with Verzuvio, I think that's how it goes. I also got another oncologist, as I lost faith in my old one who did nothing to check on my situation.

  • Sassafrassy
    Sassafrassy Member Posts: 9
    edited November 2020

    I added the information but I'm not sure if it's showing up. I will definitely check out your recommendations in other threads! Thank you so much.

  • moth
    moth Member Posts: 4,800
    edited November 2020

    after filling out the profile, you need to go to settings (left side in desktop, bottom in mobile) and change privacy settings for diagnoses and treatment (near the bottom)

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