Just shy of 9 years, local recurrence

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Adelaide77
Adelaide77 Member Posts: 43
edited July 2021 in Just Diagnosed With a Recurrence or Metastasis

Hi there. I didn’t think I’d be back here! In September 2012 (age 32), I was diagnosed with multifocal cancer in my left breast—small IDC, and about 6 cm of DCIS. I had a double mastectomy (prophylactic on right side), about a year of tamoxifen (gave me HORRIBLE anxiety/depression/suicidal thoughts, so my MO ok’d me to stop since I was low risk for recurrence). Fast forward to two months ago: felt a lump on the outside of my saline implant, cancer side. PCP ordered US (which showed actually 2 lumps, not 1). Radiologist ordered biopsy. And today, my PCP called with biopsy results (bless her for calling after hours tonight instead of having me wait till tomorrow morning to hear from the biopsy facility; she’s a BC survivor too, so she understands the anxiety of waiting). Both spots are cancerous. I think the numbers aren’t terrible (still wrapping my mind around it all), but I’m really curious/anxious what the next steps might be. Can they do rads with implants? Will they likely try to remove the masses? Is chemo protocol for most local recurrences? I know every case is different, and I’m hoping to get in touch with my MO tomorrow and get an appt soon. But also would welcome info from others who have traveled this or a similar road. First cancer was ER+/PR+, HER2-. These current masses are ER+/PR+, but heterogenous for HER2. Grade 2. (I *think* my first cancer was grade 1, but I have to check.) Also, should I expect imaging to check for distant recurrence?

Thank you.

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  • orangeflower
    orangeflower Member Posts: 146
    edited May 2021

    Hi Adelaide. I don't have answers to your questions, but I wanted to give you a big e-hug. I can only imagine how you must be feeling right now. I hope that you're not beating yourself up about the tamoxifen. I'm on a similar drug right now and having the same experience you had, and I'll probably have to discontinue it.

    Hopefully you won't automatically need chemo. Please keep us up to date on how you're doing.

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  • sunshinegal
    sunshinegal Member Posts: 209
    edited May 2021

    Hi Adelaide. First, I'm so sorry you're here. I was dx with recurrence 2 months ago - after 10 years of good health - so I know what you're going through. I'll share my experience thus far.

    In 2010 I had a mastectomy w/ implant reconstruction, and yes, they did remove my new lesion via lumpectomy - a week ago. This tumor was 6mm on imaging and 8mm on pathology after removal. My implant had ruptured so was replaced at the same time, but the plastic surgeon would have replaced it anyway in hopes that a new implant will tolerate rads better than an old one. We'll see. So yes, I'll be having radiation (didn't have it 10 yrs ago). My recurrence is hormone positive and Her2 negative, so no chemo for me. (I guess unless they send it for oncotyping and it comes back w/ a high #). I'll do hormone therapy thereafter.

    Oh and yes they did do imaging to rule out mets. I had a PET/CT scan but CT and a separate bone scan seem to be (more?) common.



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  • Jons_girl
    Jons_girl Member Posts: 696
    edited June 2021

    Adelaide:

    How is everything going for you? Can you update us

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  • Nola70115
    Nola70115 Member Posts: 85
    edited June 2021

    Hi Adelaide. I hav a local recurrence that I found in my armpit in February. In my case, after the biopsy on the lump in my armpit came back positive, the next step was a pet scan of my whole body to look for metastases. They found two lesions on my liver, so from there the next thing was to biopsy those lesions. That biopsy came back positive as well, and the sampled tissue was sent for dna analysis. The pathology showed that it’s ER/PR+ Her-, so they put me on targeted and hormonal meds. Tumors that are triple negative or Her+ have different protocols for first stage response. Chemo might be recommended depending on the situation and whether you had it before and how well it worked then.

    If it has spread beyond the armpit then it’s not just local and they take surgery off the table. I’ll only be able to get the lump in my armpit removed if it is causing me pain. Otherwise they look at surgery as too invasive when they know the cancer has spread anyway so no surgery will get all of it.

    I found the initial response time after diagnosis of the recurrence was a lot slower than it was the first time I had cancer. The treatment plans differ a lot with recurrences so they have to figure out which one you need

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  • Adelaide77
    Adelaide77 Member Posts: 43
    edited June 2021

    Thank you all for your caring and helpful responses. I really appreciate it. As of now I am scheduled for local wide excision July 7 to remove the masses (there are actually 3 separate masses, identified on MRI this past Friday, but all clustered together). Just found out that my plastics surgeon needs to be there for the surgery, as the MRI showed the tumors to be right up against tissue capsule, which surgical oncologist will need to remove. Plastic surgeon will need to be on hand to put a mesh in place of removed capsule tissue and also to possibly exchange implant for a smaller one if there is not enough skin left to close me up. So, my surgery date *could* change depending on my plastic surgeon’s schedule. Waiting to hear from her assistant. I am STILL waiting on FISH results (theysent away for FISH 15 days ago!), and I understand now that that will impact chemo or no. Breast surgeon said I will have a month recovery after surgery then start 6 weeks of radiation. I have chest+abdominal CT and bone scan scheduled for June 22 to check for distant spread.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2021

    Adelaide, I'm a bit late to the conversation, but I'm sorry to hear of what you are going through. This disease is terrible!

    I just have a couple of points that you may want to consider: with these kinds of local recurrences there is not a clear-cut a way of proceeding in the medical community. Different doctors have different opinions, but I do think there are a few general pointers that are good to follow regardless:

    - Check in with your medical oncologist ASAP. Sometimes chemo needs to be done before surgery and radiation in these situations.

    - It's good to check for distant spread *before* you have further surgery. Going through surgery and/or radiation only to find out you have metastatic disease after the fact is not in your best interest.

    - Get an opinion from an NCI designated cancer center if you are able to https://www.cancer.gov/research/infrastructure/cancer-centers/find

    I don't say this to scare you or make you feel worse in an already difficult situation. I only mention this because I had a "failed" first mastectomy after my local recurrence, which actually created more problems and should not have been done. That led to me needing a much more extensive surgery a few months later (chest wall resection with skin graft) at another hospital. This was an avoidable mistake and unfortunately it may have ruined my last window of opportunity to fix this, and I am Stage IV now. All I'm saying is, the steps you take now are very important - make sure you're in the best possible hands. Best wishes to you!

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2021

    Adelaide, Sorry I'm late to the conversation too, and I'm sorry for what you're dealing with. Having had a local recurrence, I understand your frustrations. There are not really standard protocols for local recurrences, so I do recommend talking to a variety of facilities and asking not only what they recommend, but WHY they recommend it. That will help guide things. Also, I had a major medical clinic tell me that mine was simply some cells left behind, and they refused to do Oncotype or even consider aggressive treatment. I met with a new local oncologist who ordered Oncotype (not usually used in recurrences, but I asked) and it turned out to be very aggressive (the major medical clinic changed their minds once they saw the results of the Oncotype). I did have chemo the second time and they were able to do radiation even though I have implants. It did make it more complicated, and the radiated reconstructed breast is now higher and firmer than the other reconstructed side, but no one notices if I wear a sports bra. Feel free to PM me anytime. I hope your surgery goes well and that you recover quickly.

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  • judymc1
    judymc1 Member Posts: 4
    edited July 2021

    Adelaide,

    I had a recurrence along the mastectomy scar after eleven years. I have been under treatment since September, 2020. I am having hormonal therapy only. I tske an aromotase inhibitor and another med called ibrance that makes the aromotase inhibitor work better. The ibrance is a newer medication and they are having good results long term with it. I have some side effects such as fatigue but nothing unmanageable so far. My six month scan showed that the two cancer spots had shrunk. My oncologist is pleased with the results and thinks the cancer can be managed for a long time. I hope you have a similar, positive response.

    Judy

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