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Cath62's avatar
Cath62
Member
6 months ago

Mets now in my brain

Hi Everyone  my latest scan has been a shock and made me sad. I was on enhurtu and hoping for big success. However after 4 round 2 of my liver mets increased and now i have mets in the right side of my brain. I fell over in the last treat cycle and got a black eye and I also fainted one night. Luckily the bed was beside me when I fainted. 

 

My oncologist phoned me with my results Friday and I am numb. She said the plan is this. I get a port monday, tues chemo, thurs I have a skin check (melanomas) and the oncologist is ordering an mri of the brain for my radium oncologist. I don't have an appointment yet but the plan is to radiate that brain met. Then I have one other enhurtu infusion in September and another scan. 

My oncologist tells me there is other chemo we can try and the brain mets will be treated with radium.

My husband and I are in shock and sad. My mets has progressed so fast - 2 yrs and several treatment changes already. This is so hard.

19 Replies

  • So 10 days after my oncologist phoned me to tell my husband and I that I had brain mets, today she phoned me to say after my brain MRI that I don't have brain mets. What- joy but why did she tell me i did. Well the person who reported my ct said I did. My oncologist wrote to my gp, dermatologist and radium oncologist to advise brain mets. Don't get me wrong but they put me and my family and close friends through hell for 10 days. She has even advised me to keep my appointment with the radium oncologist for extra assurance. Thay appointment is tomorrow morning and I will see the scans myself and be asking many questions about all this.  I have cried, screamed, felt depressed and so have my family. I am happy but confused so I will talk more to my drs. Sorry you all had to read my post too. I guess they get things wrong sometimes and this was a good story in the end.

    • Tri's avatar
      Tri
      Member

      HiCath62​ 

      I am so happy to hear  your brain MRI came back clear - relief and joy after  a traumatic time. A big virtual hug and a salute to your resilience.
      I hope your oncologist is able to confirm that these sorts of test results can be validated first in future - it erodes confidence. 
      But nonetheless I am really happy for you and your family :-D

    • iserbrown's avatar
      iserbrown
      Member

      Oh Cath

      Thank goodness it was an error!  Your Oncologist needs to know how you feel, relieved, angry....such diagnosis should, in my view, been double checked!  Yes, unintentional mistakes happen....thank goodness its in your favour!  Hope the comfort of the forum ladies did and will continue to help you through this damned roller-coaster 

      Take care 

      Sending a virtual 🫂 

    • arpie's avatar
      arpie
      Member

      OMG - that is fantastic news, Cath62​  xxxx. I am so happy for you xx (tho so upset you've been put thru this hell, unnecessarily!)   
      I know you'll be doing your HAPPY DANCE for a VERY LONG TIME (after screaming & shouting at the CT 'reporter' ...... surely these sort of 'life changing' findings should be double checked by a senior 'reporter' before turning a person's life upside down with a phone call!!)

      As you say, the ripples extended to your family, your friends, your buddies/friends here .....   I bet your Onc will double check any reports from that particular CT reader from now on - and NOT take them as being verbatim xxx

      I hope you can celebrate with a small wine tonight (even if watered down 50%, it will still taste GOOD - and DO you good too! xxxx)

      My love to you and hubby & BIG hugs xx 

  • So I have a brain mri this Friday and see the radium oncologist Tuesday for results and next steps. I think that based on my regular oncologist discussion I am having 1 more chemo of enhurtu on 9th September and then a scan to see if i stay on that or more to another chemo drugs. The radium will need mapping etc before I get zapped and I am not sure if chemo will stop while that do this. I think my oncologist runs both treatments parallel. 

    Unfortunately the cancer in me is Luminal B which faster growing and a very poor prognosis.

     

    Breast cancer of course has all the different subtypes of her2 status  hormone positive or negative etc but people need to be aware of the Luminal status which the ki-67 factor is part of.

    My early bc had a very high ki-67 factor and hence needing chemo when my early bc was diagnosed. I hadn't realised at the time that it is also important to understand ones ki-67 factor and their Luminal type. Luminal A is very slow growing and treatment is more effective for that but Luminal B is the most aggressive and has a poor prognosis. 

    I don't want others to be frightened by this but again information about our disease is important to help us manage it and ourselves and balancing our expectations of treatment.

    My goal is quality of life and extending my time while now making sure I am prepared for next steps.

    • arpie's avatar
      arpie
      Member

      All the best for the MRI and ongoing discussions with your Rad Onc  Cath62​ xx. Thank you so much for your reply and opening up the discussion on Luminal A & B xx

      Like Tri​, I've never heard of Luminal A or B .... it looks like we really DO need to have an understanding of how important it is to a long term prognosis. xx. Thank you for mentioning this - knowledge is power xx.   

      My ki-67 was 25% with a hotspot within the tumours of 50% ....
      Luminal type wasn't mentioned, but it said the Mitotic Score was highest in the 'hot spot' .... and looking up Mitotic Score, it sounds sort of similar to Luminal .... 

      In breast cancer pathology, the mitotic score, also known as the mitotic index (MI), reflects the rate at which cancer cells are dividing and multiplying. It is a crucial component of the Nottingham Prognostic Index, a system used to assess the aggressiveness of breast cancer and predict its behavior. A higher mitotic score typically indicates a more aggressive tumor with a higher chance of recurrence

      And then comparing Luminal scoring vs Mitotic Scoring ......

      In the context of breast cancer, "luminal" and "mitotic score" are two distinct but related factors used in pathology reports to assess the characteristics and behavior of a tumor. Luminal refers to a subtype of breast cancer characterized by the expression of estrogen receptors (ER) and/or progesterone receptors (PR), while the mitotic score indicates the rate of cell division within the tumor, a measure of its aggressiveness. 

      Luminal Subtypes:

      • Luminal A:
      • Characterized by ER and PR positivity, HER2 negativity, and lower proliferation rates (often indicated by low Ki-67 index). They generally have a better prognosis.
      • Luminal B:
      • Characterized by ER positivity, and either PR negativity or low expression, and HER2 positivity or negativity. They tend to have higher proliferation rates and a less favorable prognosis compared to Luminal A. 


      Mitotic Score:

      • The mitotic score, also known as the mitotic index, is a measure of how quickly cancer cells are dividing. 
      • It is typically assessed by counting the number of mitotic figures (cells undergoing division) in a specific area of the tumor (e.g., per 10 high-power fields). 
      • A higher mitotic score indicates a higher rate of cell division, suggesting a more aggressive tumor. 

      Relationship between Luminal Subtypes and Mitotic Score:

      • Luminal A tumors typically have a lower mitotic score (less aggressive) compared to Luminal B tumors. 
      • High mitotic activity (high mitotic score) is often associated with Luminal B, triple-negative, and high-grade tumors. 
      • A high mitotic score in combination with other factors like high Ki-67 index is often associated with poorer prognosis. 

      In essence, the mitotic score provides an indication of how quickly the cancer cells are growing and dividing, while the luminal subtype classification helps to categorize the tumor based on its hormonal receptor status and proliferation rate, both of which are important for determining prognosis and treatment strategies. 

      • Cath62's avatar
        Cath62
        Member

        I think the Luminal status can really only be determined after they see how the cancer behaves but certainly a high ki-67 factor is a strong indicator of it.

    • Tri's avatar
      Tri
      Member

      Cath62​ thank you for sharing this information about your Luminal B status. I first heard about my “ ki-67” number when additional chemo was recommended after my lumpectomy, based on my result status after my lumpectomy ( the pathology in the latent cancer cells had a low ki-67). It’s very generous of you to raise awareness about it, when you must have so much going on. I don’t think the Luminal type was mentioned but I will ask my oncologist next month at my check up. Thank you for your support to all of us and raising awareness, sending you lots of positive thoughts and hugs. 

  • Cath62​ no apologies needed, I am not in the Mets group but I echoiserbrown​ comment - I am sorry for the shock of this for you and your partner and sending you virtual hugs. I am glad the sun shined for you and you could dance by a river and experience some well deserved joy in amongst this. 🌸

     

  • I just realised I didn't post this in the mets group. Apologies if I have upset anyone. I didn't mean for this to be a general post. I really thought I was posting in the mets group. 

    • arpie's avatar
      arpie
      Member

      No apologies needed Cath62​  xx We are here for you xx    Keep dancing in the sun, singing in the rain & just keep doing what you love doing xxx 

      You are very dear to us and we are on the train with you xx    take care, buddy xx

    • iserbrown's avatar
      iserbrown
      Member

      Hi Cath

      Glad you posted here as I'm not a member of the Metastatic group

      Sometimes I wonder how you and others are going!  Although news you don't want at least us in the main forum, knowing where you are at, can send positive vibes your way

      Fingers crossed 🤞 

      Sending a virtual hug ⚘️ 

      Take care

  • Dear Cathie I am so sorry to hear this.  I will be sending you an extra hard hug.  Please know that I am thinking of you.  I will be sending positive thoughts to the universe for treatment.  Love you.  Xxx

  • Thanks everyone. I will see my oncologist on Tuesday during my chemo and get more details and can ask about the treatment plan and query different things, especially since we had the weekend to think about it all. Still a little scared and overwhelmed but I have had a good weekend and beautiful weather. I even danced at a bar by the river today. 

  • I am so sorry to read this, Cath62​   The shock is immense, as is the sadness xx  Sending big hugs to you and your hubby xxxx


    As Blossom1961​ has mentioned re the gamma knife treatment, another friend of mine in Melbourne had it done last year & is also going much better xx 

    Maybe get your Breast Care Nurse/Rad Onc to look into it as a matter of urgency - as it may be better to have it done before any 'regular' rads are done?

    take care my friend xxx. You are in my thoughts & prayers xx

  • Cath62 I know the shock. Mine was numbing but felt like an explosion had taken place inside of me. I don't have liver mets but the brain mets was a curveball.

     I was treated with the Gamma Knife Treatment at Peter Mac. Three rounds of zapping over three consecutive days for twenty five minutes each. That was a year ago and the brain mets has shrunk dramatically. Ask if you qualify. This machine is only in Melbourne, Sydney and Brisbane.

    Sending huge hugs and prayers as you navigate through this latest storm. My shock lasted until weeks after treatment. That was in June/July last year. 😢❤️

  • Oh Cath62

    Goodness!  Hopefully it has been caught early enough to be zapped away!

    Sending you a virtual 🫂 

    Please know that we have you on our thoughts

    Best wishes 

  • Hi Cath62

    Thats a bummer.Are  seeing a psychologist/counsellor?Are you eligible for any clinical trials?Hopefully as well as the radiation treatment there should be another line of systemic treatment available.

    Deep breaths and I am sending you virtual hugs.