Mets 6 months after complete response?

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fidget
fidget Member Posts: 135
edited November 2016 in HER2+ (Positive) Breast Cancer

Hey everyone. I've posted in a few places about my situation and was wondering if any of you HER2+ ladies know of anything similar. I finished my "bad" chemo in January of this year and then lumpectomy and SNB showed a PCR. I only have 3 more Herceptin infusions left. I was having some back pain and mentioned it to my whole medical team. Every one of them said they would be shocked if it was cancer related so they let it go except my surgeon who ordered a bone scan for my own peace of mind. He said if that was negative, he would order an MRI to point me in the right direction for pain management. So after a CT scan that was done for elevated liver enzymes that came back clear, a bone scan that showed nothing but a degenerative disc, the MRI showed two 7mm lesions on my spine at the L1 and L2 (my bad disc is L5 S1). This all happened within two weeks. When my CT scan for the liver came back clean, my MO even remarked everyone should leave me alone because I had such a great outcome. Now I have a PET scan this Wednesday. I suspect it is to look for more mets. I really don't think a PET would show anything different from the MRI. Anyone have any insight?

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited August 2016

    PET will show if it's active cancer. The lesions could be: 1. not cancer, 2. healed cancerous lesions. Lesion is a pretty general term. I have both cancerous and non cancerous lesion. I have had both active and healing lesions. I hope your PET is negative.

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  • fidget
    fidget Member Posts: 135
    edited August 2016

    Thanks Maine. I never even thought of the lesions as not being active. I just heard "suspicious of metastatic disease" and lost my mind. Plus, my surgeon just kept saying over and over that he was sorry to have to give me the news. Trying to keep it together until the PET scan on Wednesday.


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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited August 2016

    The anxiety of waiting is the pits. I don't blame you for freaking a little. I did too. Keep us posted. I am pulling for a big nothing on your PET.

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  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    I have no words of wisdom, but wanted to send best wishes for good PET results.

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  • CameraKim
    CameraKim Member Posts: 81
    edited August 2016

    Just wanted to chime in that when I was first diagnosed, I had a lesion on a rib next to my tumor. I had a pet scan, but results were inconclusive. The team determined to proceed as though the lesion was not cancer and watch to see how it reacted to chemo. We found that it did not change at all, therefore determined not cancer. Hope this turns out to be absolutely nothing!!

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  • awnie1301
    awnie1301 Member Posts: 59
    edited August 2016

    Hi,

    I was just posting in the Stage 3 forum about a similar situation. I had some serious back pain issues and my MO ordered a bone scan. The bone scan showed my back to be totally fine but I have 3 or 4 "sclerotic lesions" on my ribs that were "suspicious of malignancy". WTF!!

    I had a normal bone scan last August...absolutely nothing on the ribs. The only explanation would be trauma or cancer.

    In September (right after that scan) I developed bronchitis and coughed so hard I was certain I had broken some ribs...I could barely move. A chest X-Ray at the time was normal.

    So 3 weeks ago, when I got this new information you can imagine I was freaking out. I ended up paying to have a private PET (I am in Canada).

    The PET showed no uptake in the lesions!!. The radiologist spoke with my husband (my DH is a physician) and assured him that the spots looked like healing rib fractures.

    I am somewhat reassured but my MO has ordered another PET in the fall for a follow up.

    Lesion is definitely a scary word in our world but I could mean a few things. Fingers crossed for you.

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  • fidget
    fidget Member Posts: 135
    edited August 2016

    Thanks everyone for your insight. I feel even worse today. I showed up for my herceptin infusion and let my chemo nurse know what was going on so I could schedule to see my MO after my PET scan. She seemed to be thinking on the positive side and said herceptin has worked wonders, but then she looked up my MRI results for herself and her face just dropped. So now I'm just hoping the scan tomorrow doesn't show even more. I guess recurring so quickly being HER2+ just scares me. Dr. Google doesn't help. My nurse told me we'll fight this no matter what it is. I just hope I have enough fight left in me.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    I want to give you hope since I am almost 5 years out and was only able to have 3 months of Herceptin due to heart valve damage,was Stage 3a with huge tumor, Triple Positive.

    I had similar situation...a bone scan found an abnormall lesion on my leg below the knee, then it showed up on MRI - plus it was hurting quite a lot. I didn't even tell my MO how much it was hurting. Then they did a regular old-fashioned x-ray. Finally, my MO and radiologist got together and collectively said "watch and wait."

    It never turned out to be anything - if it was, it healed.

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  • fidget
    fidget Member Posts: 135
    edited August 2016

    Thanks everyone. Well the PET scan on Wednesday showed nothing. My surgeon repeated "not a single darned thing". So I have to see my MO when he gets back from vacation next Thursday. So the CT, bone scan and PET said no, but the MRI said yes. I just love being special I guess. The MRI said possible large hemangiomas or mets in T12, highly suspicious metastatic disease on L1 and L2. And of course my degenerative disc in L5 S1. So what do I do with this? Ugh, more waiting. My surgeon is choosing to go with the no cancer the herceptin worked attitude. Speaking of which, I wasn't able to have my herceptin infusion on Tuesday because the radiations guys said no form of chemo, including herceptin two weeks before or two weeks after a PET scan. Anybody else hear of this? Now I hope missing that one infusion doesn't mess me up. So I guess at least until I see my MO, I'm still on the herceptin worked train.


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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited August 2016

    They will need to do a bone biopsy if they are unable to make a Dx from scans. Also, I routinely have PET scans within days of having a Herceptin infusion and with weekly Taxol when I was on that treatment.

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  • Itsmejennifer
    Itsmejennifer Member Posts: 5
    edited August 2016

    I was originally diagnosed in 1998 with Stage II, PR-/ER-/Her2+. AC/Taxol/lumpectomy/radiation. All good until 2013!!! Mets to opposite side lung. Same cancer. Taxotere/Perjeta/Herceptin and double mastectomy. Worked! In remission again for 3.5 years. I've been on just Herceptin alone for about 3 years. My heart has started to show some muscle weakness so onc is taking me off. Scary but high hopes that I'll have many more years of remission. May start Herceptin again after my heart gets stronger. Nice to have the break in any case. I get horrible muscle spasms in neck, legs, feet. Hope they let up while I'm not on Herceptin.

    Mostly want to say, don't let your guard down ever.....it was 15 years cancer free for me and then,recurrence. Crazy!Good thing is Perjeta!!!!! Wonderful fairly new drug for Her2+ Don't give up hope if you have mets!!!

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited August 2016

    The only other thing I will add is that MRI is notorious for false positive. I think the PET is the most conclusive. Here's hoping all remains well.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    Did you have baseline body scans before you started your initial chemo??? If no, then it's possible the lesions are mets (healed or otherwise) that were there all along. If you did have baseline scans that showed nothing, I doubt you would've developed mets on treatment, especially given your response..

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  • fidget
    fidget Member Posts: 135
    edited August 2016

    Bad--I only had a breast MRI and an abdominal CT in the beginning. When I told my RO about the back pain, she looked up that CT and said the bones in that area were clear so she seriously doubted the pain was cancer related. The other MO in the practice agreed. My surgeon agrees with you that it's unlikely for me to have developed mets while on treatment because of the complete response to a pretty large tumor. But as I always say, I like to be different. <sigh> He ordered the bone scan and MRI more or less to give me peace of mind. Go figure.

    Jen--That's what I have been wondering about. Who trumps who? MRI or PET? Which has the most false positives AND negatives? I would imagine the PET would be more definitive in seeing active cancer cells, but that could just be wishful thinking on my part. In the past 3 1/2 weeks, I've had 4 scans. Bone, CT, MRI, and PET. All negative but the MRI which seemed very positive.

    Itsme--I'm so sorry you've had to go through this crap again. Thanks for sharing your story with me. I am trying very hard to keep the faith and not give up.

    Trying to keep busy until my MO appointment on Thursday. That guy has got to stop going on vacation. LOL. I'll update as soon as I see him.


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  • fidget
    fidget Member Posts: 135
    edited August 2016

    Update--Saw the MO today. He's pretty confident the PET is correct. He said it picked up nothing and concluded with "No evidence of tumor or metastatic disease". He said the MRI most likely saw blood vessels pooling. We'll repeat the MRI in 3 months just to make sure there is no change. He said the spots are too small to biopsy, but he's not worried about me. This should be great news for me, but I guess I'll feel better in 3 months.

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited August 2016

    This IS great news! I am happy for you. Enjoy the three months and reassess at that time.

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  • fidget
    fidget Member Posts: 135
    edited November 2016

    Hey everyone. Just wanted to post an update. I had another MRI last week, and yesterday met with my MO. He said the MRI was fine and asked me was I ready to get my port out!! I am just so thrilled beyond words. Thank you all for so much support. I would be a basket case if it wasn't for this place. Hopefully I can enjoy the holidays this year without so much worry. I know it will always be in the back of my mind though. Hopefully it will get easier.

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