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Stage 4 de novo Treatment

pink36
pink36 Member Posts: 5

I am 36 yrs old. I was initially thought to be a stage 2 with lymph node involvement. The plan was neoadjuvant chemo (TCHP) as Im a triple positive to shrink the mass and then surgery. After that, Tamoxifen for 5 to 10 yrs. My pet scan showed a liver lesion which would mean I am de novo stage 4. The doctor initially said that my treatment would be the same either way. Does that mean that they will still remove the lump and affected lymph nodes? Has anyone had a similar diagnosis or similar treatment

Comments

  • mucki1991
    mucki1991 Member Posts: 77

    I can't answer this but you will prob get a quicker reply if you post in the stage 4 boards. I am sorry your going through this but the ladies here are pretty darn awesome with education and emotional support.

    Best Wishes

  • illimae
    illimae Member Posts: 5,509

    Me! My met was to my hip bone, not liver but I kept the same plan as when they initially thought I might be stage 3. I had a rare reaction to taxotere and taxol (I'm special, lol), so I did weekly abraxane with Herceptin and Perjeta every 3rd week, it all worked very well and we proceeded with a lumpectomy and reduction/lift to match, then 30 rounds of radiation. After all that and adding tamoxifen, I did have 5 spots found in my brain which weren't there initially but the brain and body are treated separately due to the blood brain barrier, got those suckers zapped too!

  • Honeybee68
    Honeybee68 Member Posts: 3

    I am in a similar boat. The medical oncologist thought I am a stage II or III, but then two spots showed up on my liver in a CT scan. I am doing a liver biopsy tomorrow. A breast MRI also showed that the IDC has likely invaded the chest wall.

    Are you going to have a liver biopsy so you know whether it is malignant? My understanding is that if the liver lesion is malignant, they will not do breast surgery. It will be stage IV and thus treated with chemo, targeted therapy, etc., but no surgery.

  • pink36
    pink36 Member Posts: 5

    I got the results from the nurse. I won’t meet with my doctor until tomorrow. The nurse said that more than likely they wont do a biopsy but may order an additional mri or ultrasound. Some women in a facebook group that Im apart of still had lumptecomies and nodes removed if the cancer had only metastasized to one place. This is all new to me.
  • stephincanada
    stephincanada Member Posts: 29

    Hi Pink36,

    I am so sorry about your diagnosis. I recently read an article about those who were diagnosed stage IV de novo and given Herceptin. I can't recall where I read this, but, if memory serves correctly, about 13% achieved "no evidence of disease" after treatment. Those who had the breast tumour removed were more likely to achieve NED. Also, those who were "oligometastatic" (distant relapse in limited places), which you are, were more likely to achieve NED. This study suggests it would be worthwhile to have the tumor removed, but please ask your doctor if this is correct. If I remember where I read it, I'll PM you the link. I know it is easier said than done, but have hope--all is not lost.

    Very best wishes to you.

    Stephanie

  • Honeybee68
    Honeybee68 Member Posts: 3

    I did an MRI of the liver first too. It didn't help distinguish whether the liver spots were benign or not, so I had the biopsy yesterday. I hope the MRI gives you more answers than it did me. Good luck to you.

  • KBeee
    KBeee Member Posts: 695

    Every doctor is different but it seems that in the last couple years, they are indeed doing breast surgery when de nova stage IV with isolated metastasis. Multiple opinions would be a good idea

  • TwinkleCat
    TwinkleCat Member Posts: 31

    I am also de novo stage IV, with bone mets and a small brain met. I was diagnosed 7/23 with what they was stage I or II -- tumor is small but with lymph node involvement. But subsequent PET scan on 8/8 and MRI (to assess what was thought to be an unrelated inner ear issue) on 8/9 showed mets. Will meet with RO and MO next week to go over new treatment plan. I was told I will no longer be getting surgery -- I think due to multiple mets -- but will follow up with my surgeon next week.

  • daywalker
    daywalker Member Posts: 77

    I was also stage 2 initially, had mastectomy and lymph nodes removed, then CT scan which showed one 2cm lesion on my liver.. So within two weeks I went from stage 2 to stage 4, wow to say it was a shocking experience is quite the understatement.. Anyways, my chemo regimen was not affected by the change in status, I continued with Dosetaxil and Herceptin, and that legion disappeared after two infusions.. This was more than a year ago and my liver is still clear.. Hang in there, the meds work well on the liver, the only question is whether you will remove the primary tumor when things settle down or not.. All the best xx

  • Sparkles2_2
    Sparkles2_2 Member Posts: 8

    Hey I was in same spot. Originally thought to be stage 3 ct scan was clear but bone scan showed a single met to t5 (that little bastard). My MO surgeon and RO have all had the same approach chemo surgery radiation hormone and targeted therapy. I am now on radiation yay! My RO calls me a stage 3 plus lo

  • illimae
    illimae Member Posts: 5,509

    sparkles, funny, I was called “stage 4 lite”, lol

  • ssinuk
    ssinuk Member Posts: 63

    hope I’m not intruding but my dear friend discovered she was stage 4 de novo in between Neo adjuvant chemo and surgery (multiple small spinal mets missed on initial scans abroad). Despite unhelpful surgeon she completed surgery with a PCR in the breast. She is now 5 years out andNED on tamoxifen alone. Just wanted to share as it is such a positive hopeful story. She was my rock and guardian during my own dx

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173

    I’ve read so many entries on this board and feel like I’m reading my own story. Just got the final path back following my bmx. The doctor said that there was about 2cm left of tumor in my breast (original excised amount was 1cm). (When it was originally excused, doctors thought it was just a lump). And, contrary to the report I received after surgery, 1 of my 6 nodes is positive (8mm). I am crushed. I've cried and cried. I've looked at my sweet kids faces, just hoping I get to see them get married. This has completely wrecked me. My husband is so incredibly supportive but I feel like I'm past the point of support. My dr was able to get me a PET scan tomorrow morning. I'm trying to keep it together for the kids and continuing to work but I'm almost completely broken. Found out my onco score was 26 last week as well. This has shattered me to pieces. I am talking with MDAnderson to try and get an appointment. I just don't know what else to do. I’m freaking out.

  • illimae
    illimae Member Posts: 5,509

    Sadlynew2018, I know the fear you feel but nothing you’ve posted says stage IV yet, please try to be optimistic. Even if you are joining our club later, it’s not the end. Also, I go to MDA, if you have questions, let me know.

  • pink36
    pink36 Member Posts: 5

    Update: The initial pet scan showed a positive node in the axilla, pec and mediastinum. It also showed a liver nodule. When I went in for a liver biopsy, they couldnt find the nodule. However, they did determine that I have a fatty liver. My CA 15-3 is down to 30. It started out at 36. I have one more round of chemo to go and then I’ll get new scans

  • Rosie24
    Rosie24 Member Posts: 1,026

    Hi All, I'm recently diagnosed with DCIS, IDC and lymph involvement. I was expecting to start chemo as the first treatment within the next week.

    I received results of my bone and CT scans today. There is a 4mm nodule, suspicious for malignancy, on my lung and two small spots on my liver. I've had sleepless nights waiting for the results and had already gone to the worst in my imagination so I feel almost not surprised. I'm wondering if these are typically tested further or will I most likely go on with the expected chemo etc. My doctor (BS) said the team will make a plan for me and the oncologist will discuss it with me at my upcoming appointment, which is in 2 days. Again, my mind is running away with me. Any experience with this? Should I consider that I'm now stage IV

  • pink36
    pink36 Member Posts: 5

    I would be cautiously optimistic. It’s not unusual to have benign nodules on the liver or lungs. I woud be sure to ask for a biopsy.

  • Rosie24
    Rosie24 Member Posts: 1,026

    Thanks for responding, pink. I really hate this ride I’m on and I’ve barely started

  • pink36
    pink36 Member Posts: 5

    It’s very scary in the beginning but you will feel better once you have a plan in place. I was diagnosed stage 4 denovo this past May

  • KBeee
    KBeee Member Posts: 695

    Rosie, hoping these are benign. Let us know.

    Sadlynews, Many, many, many women on here have positive nodes and have done great. My friend had 26 positive nodes...all up through her breast, axilla, and neck. She's doing great. Your doctor will likely recommend chemo with your oncotype. I have done it twice and did well both times. I have 3 kids, so doing all I could was really important to me. You CAN do this.

  • Erkipper
    Erkipper Member Posts: 24

    Hi there illimae. Read your post and was wondering how you treated the brain spots? I had 2 seizures on 12/3/18 and it was discovered that my almost 3 year being cancer free had returned. I did the gamma knife procedure. I go go back 1st of February to see whats up. If you did the gamma knife I have a question for you. Thank you for any info

  • illimae
    illimae Member Posts: 5,509

    Erkipper, I’ve had gamma knife twice to treat my lesions in Oct 2017 and April 2018, 5 spots (largest was 6mm or .6 cm)each time. I am currently stable with just a single remnant that we’re watching. I’m happy to answer any questions.