Primary to Secondary and now CONFUSED!!!

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Cosmogirl
Cosmogirl Member Posts: 30
edited July 2016 in Stage IV/Metastatic Breast Cancer ONLY

I was diagnosed with primary breast cancer in November 2015 and started chemo a month later in the December. I was mid way through 6 x 3 weekly cycles of FEC-T when I fell ill with sepsis. Whilst admitted into hospital for sepsis the ward doctors did a CT scan to find the origin of the sepsis. The CT scan showed that I had bone metastases that had healed. This information was not passed from the ward doctors to my specialists/oncologists until today, 3 months after the CT scan. Today I have been told that I now have secondary breast cancer.

I had a CT prior to this in November 2015, this was clear. My February CT showed bone metastases that had healed. I am CONFUSED!!!

Whilst having chemo, the cancer spread to my bones and then was healed because of the chemo. How do I know if since the February CT, that more cancer has't spread and not healed?

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Hi CosmoGirl,

    Welcome to our group!

    While I'm sorry you need to be here, you're in good and like company.

    Many of us know a lot and I hope those who know more will answer your questions...or give you some good questions to ask your specialists.

    It sounds like you are in the UK where metastasis is called secondary breast cancer. Your treatment course may change along with your diagnosis, so be sure to talk with your oncologists about that too.

    May you find good answers to your medical questions from your specialists and good support and information here at bco.

    sending warmest healing wishes from California, Stephanie

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    Cosmogirl -

    CT scans often miss bone mets. Generally they do a CT scans WITH a bone scan or a pet scan when they are trying to find bone mets. Imaging diagnostics are tricky to read, fallible and the different types pick up different things. I am NOT AN EXPERT, but I suspect you had those bone mets before you started chemo. I'd be very interested in what your oncologist has to say.

    Congratulations. I'd rather find healed bone mets than active bone mets.

    And if you have actually gotten rid of all the metastasis, there are people who would argue that you are back in the group of people who can be cured. It is called oligometastasis.

    I am sorry you are dealing with this ridiculous diagnostic process where people tell you one thing with great authority, then the opposite. Again with great authority. I've been there myself. I've read on these threads several people who were diagnosed as stage I or II but look back and see that someone missed their metastasis.

    But there is strange silver lining in your situation.

    If you want a more informed response from the very experienced and detail oriented folks on this forum, complete the diagnostic and treatment information in your profile AND make it public. Two steps.

    >K<

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2016

    As bad as it looks to be stage IV, the chemo seems to be working!!! You will be monitored more closely now than if you were early stage so more labs or scans should be in the works, the latter maybe after chemo. I'll be keeping my fingers crossed that these show no changes, no new lesions.

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  • Cosmogirl
    Cosmogirl Member Posts: 30
    edited May 2016

    Thank you Longtermsurvivor, Zarovka & Heidihill.

    I suppose my confusion lays in that if the cancer had spread and healed whilst having chemo Dec - Feb, it could just as easily of spread and not healed since my CT scan in February.

    I never got my CT results from February until yesterday as the CT was done by a ward Doctor when I was admitted for Sepsis and he never relayed the results to my Oncologist.

    I am waiting for the hospital to ring me with a new Oncology appointment but am worried sick.

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    Keep us posted.

    We all know what that worry is like. Nothing to do but go through it because this is a very scary space to be in. But in a few weeks I believe you will find yourself with a treatment plan with a lot of hope. The options are better than they were. Some people do very well. I believe people who are well informed and take charge of their care do better. No one will manage your treatment better then you. Your recent experience likely already brought that point home.

    If you haven't read best bird summary of current treatment options, it may be the best place to start figuring out how you will get through this.

    >Z<

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  • indenial
    indenial Member Posts: 504
    edited May 2016

    Cosmogirl, I can really relate. I had a bone scan in December. I was told it was all clear. I went to a routine follow up with my oncologist last month and he says we need to redo the bone scan because of a spot on my rib. A bunch more scans and one biopsy later, I found out I had mets. But I thought the original bone scan was clear and I just don't get how this happened.

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  • Cosmogirl
    Cosmogirl Member Posts: 30
    edited July 2016

    Hi there indenial, well I can relate to you I am just as confused by bone scans, last month I was told I had 4 more bone mets and then the oncologist and his team had a meeting to review my previous scans and am now told that my mets were not visible on scans but have become visible as they have responded to hormone treatment as they are now sclerotic in nature? I am completely clueless now its got me wondering how many more mets might I have that a scan isn't showing?!

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  • indenial
    indenial Member Posts: 504
    edited July 2016

    It's all so confusing! I had a spot show on my cervical spine - but it only showed on PET scan! MRI, CT, x-rays, and bone scan were all clear except the met on my rib. However, apparently I need radiation to my neck if there is indeed a met there, but no one can decide if it's there. So how many other mets might not be showing up? I tend to have strange pain patterns (pain is suddenly disabling, then completely disappears... Are these mets forming and quickly healing, or just some weird pain condition?) Do clear scans mean nothing???

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  • Cosmogirl
    Cosmogirl Member Posts: 30
    edited July 2016

    Indenial I am starting to think the same thing about scans! I've not had a bone, PET or MRI scan just a CT 3 times, when did you have PET scan? I wonder why I've not had that or other scans and apart from bone density scan I'm having next week I'm still feeling in the dark about exactly what lesions I actually have I'm starting 3 weeks of radiotherepy next week also to my right chest wall and nodal area and they might include mets in my sternum, glad they know what they are doing while I'm in the dark trying to stay positive!

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  • indenial
    indenial Member Posts: 504
    edited July 2016

    That sounds a bit off to me, I'd think they'd want to do a little more thorough scanning? My doctor explained that we need the scans as a baseline to see if treatments are working or not. I would think just a CT might not be adequate to get the full scope of what's going on with you. It seems like most have either a PET or a bone scan initially. I'd ask about that. Might just be that the CT gave all the needed info...

    When I started having pain, I had bone scan and x-rays. One spot showed on bone scan so we repeated that test a couple months later. Spot had grown so we did a CT to further investigate. That led to a bone biopsy. Once it was confirmed as cancer, I was supposed to have a more thorough CT, but asked for a PET instead (I would rather use the PET/CT as baseline than the bone scan/CT). After the PET scan there was some question of spine mets so I had a full-spine MRI. That didn't clarify things so I need to redo the MRI in a couple weeks. It seems I have gotten excessive testing, especially given that I have limited mets.

    I'm also concerned that your doctors seem not to be conveying their knowledge to you very well... maybe a second opinion would help? Get someone else's perspective and they might be able to explain things better? They shouldn't be leaving you in the dark.

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    cosmogirl - CT scans pick up metastasis to soft tissue are but they are not great at picking up bone mets. you need a bone scan to even begin to know what is going on. pet scans are considered highly accurate with bone mets but can also have errors. only a biopsy can conclusively determine metastasis. i do think you need second opinion before you do any treatment. fortunately bone mets can be very slow moving.

    >Z<

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  • Cosmogirl
    Cosmogirl Member Posts: 30
    edited July 2016

    Thank you both for that information it seems a few questions to my oncologist need asking and a second opinion sounds like a good idea!

    I always tell them they are the experts and whatever they decide is right for me, trouble is all the way through from primary diagnosis to where I am now I have felt as if things have been left too long and I know communication is key.

    This place is amaxing and all you ladies really help me in my dark times a BIG thank you to all I really am just trying to do the best I can with the knowledge I have at the time even though I feel frustrated mostly I am still going to remain positive.


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