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I have a question for my mom

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fathea
fathea Member Posts: 33

My mom just diagnosed with recurrence and we are waiting for the PET scan to see if it’s local or there is Mets


the doctor is saying it’s unlikely to be Mets as the biopsy result shows ki67 is 10 % and The tumor size if 10mm


my mom still worries and she is asking if they believe there is no Mets why they are doing a PET scan to rule it out ?

they also said the surgery is highly depending on the scan results


any thoughts

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited July 2022
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    fathea,

    I may be misunderstanding your question. Regardless of the size of a breast tumor, metastasis cannot be determined by what is in the breast. I think her doctor is trying to say the odds are in her favor. A scan will allow other parts of the body to be visualized to check for mets and if any areas of suspicion show up, a biopsy will be done to confirm that it is metastatic bc. Believing there are no Mets and actually using imaging to confirm or negate this are two very different things! There is simply no way to determine the absence or presence of mets by imaging and breast biopsies alone. As far as ki67 or other tumor markers, that may or may not mean anything by itself.

    Although there are exceptions to everything in this world, a scan and then a biopsy if needed is the most prevalent way to confirm mets.I apologize if I misunderstood your question.

  • fathea
    fathea Member Posts: 33
    edited July 2022
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    Hi exbrnxgrl

    That is very helpful

    but I though that PET scan is the end so if I understand this correct if there is any suspicious area they will do biopsy ?

    This will delay her treatment again for some time ? I just hope to start any treatment soon

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited July 2022
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    fathea,

    What would a PET scan be the end of? Just because something lights up on a PET does not mean it is a bc metastasis.A biopsy would be done on the suspicious area to confirm that it is bc and then to the sample is analyzed for specifics (Er, PR, HER2). Sometimes an area can’t be biopsied due to location but that is less common. A biopsy usually happens fairly quickly if any suspicious areas are seen on the PET so I think you shouldn’t be concerned about delays if your mom has metastasis. Take care

  • fathea
    fathea Member Posts: 33
    edited July 2022
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    exbrnxgrl


    so just got a call from the nurse coordinator that the breast surgeon would like to see us tomorrow to discuss the plan

    I am so scared at this point .. Not sure what to expect


    I am not taking my mom with me, I will just go alone and get the news 😭😭😭

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited July 2022
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    fathea,

    My thoughts are with you! May I ask why your mom is not going to be present? Is she involved in the entire process? Since none of us have a crystal ball, the unknown can be a bit scary but just deal with what you know now.

    On your other thread you indicated that this is not your mom’s first bc diagnosis. Am I reading that correctly? If so, it is possible to have a local recurrence which would not be considered metastasis. Do you want to keep updating us on this thread? It really is helpful, in terms of understanding the situation, to have all of your mom’s info on one thread. Take care

  • quietgirl
    quietgirl Member Posts: 165
    edited July 2022
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    fathea

    I had to go back and find it and I realize your mom is 78 but unless you have health care power of decision for your mom (so they can release her medical information to you without her present) or the breast surgeon has agreed to meet with you alone. It might be pointless for you to go on your own. I’m not sure how helpful it will be as your mom is still going to need to be involved in making treatment decisions and at this point you still don’t know what the results are. While it might be possible for you to talk to the surgeon before he tells your mom, I would highly encourage you to go together so you can get whatever plan moving more quickly.

  • fathea
    fathea Member Posts: 33
    edited July 2022
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    exbrnxgrl


    I am just afraid to take my mom with me

    I don’t know what the doctor will say, she suppose to tell us the PET scan result and if my mom will be eligible for surgery

    So if the PET scan is clean so they will move foreword with the surgery

    I just want my mom to receive the information gradually

    For her cancer is a dead sentence and I don’t know what the doctor will say

    Your right this is the second cancer and the first one was similar to this one

    I just don’t want her to take a bad news if there is any


  • fathea
    fathea Member Posts: 33
    edited July 2022
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    quietgirl

    We live in Qatar

    So here in Qatar the doctors allowed to share information with first degree family members

    I am the caregiver and I am the one who is taking care of all her issues including health appointments, medications and so on

    It’s very stressful to let her know any news she dose not want to hear ..

    she spent many days since diagnosis crying and thinking about death

    Unfortunately in our culture Cancer is considered deadly and we have many misconception that I believe needs to be corrected

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited July 2022
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    fathea,

    Thank you for your explanation as it helps us understand your mom’s situation better. While most of us in the US would want to be involved in every aspect of our breast cancer care, I understand that cultural differences play a role in how we deal with illness. Cancer is still a scary word, even here, but things are slowly changing. However despite the fact that far too many still die from cancer, many more are living with it. I have lived with bone mets for 11 years and though this is not common for stage IV, more amd more people are surviving longer.

    I am glad you have spoken with your psychiatrist because you need to remember to take care of yourself. As a caregiver you will also be under stress so don’t ignore your needs. Please let us know how it went. Inshallah, things will work out

  • fathea
    fathea Member Posts: 33
    edited July 2022
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    exbrnxgrl

    God bless you


    I feel good sharing my feelings and news here at least I have some one who are in similar situation

    I am not sure how I will spend the night

    I am trying to be positive and think if they find anything abnormal why the surgeon called us ? It should be the oncologist lol

    Or maybe the worst case scenarios she is calling us to apologize and reference us back to the oncologist


    you know all these kind of scenarios is in my head right now

    Any how let’s hope for the best ♥️

  • fathea
    fathea Member Posts: 33
    edited July 2022
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    exbrnxgrl,

    so I just came back from the doctor office

    she told me that my mom is not eligible for surgery

    the PET scan shows 2 suspicious small nodules on both lungs and they decided to only give hormonal therapy probably Tamoxifen

    and due to her age they don't want to do further investigations (biopsy and so on)

    the doctor told me after starting the hormonal therapy they will do another PET in 6 months to monitor

    she is saying in case the lung nodules is cancerous so they should respond to the treatment if not then they will stay the same.

    to be honest I have no feelings and don't know what to expect or whom should I talked to


    we. will meet the oncologist next week to start the prescribe the medication


  • alicebastable
    alicebastable Member Posts: 1,945
    edited July 2022
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    Hi Fathead

    I'm popping in here to give you one answer. I have lung nodules. I had both breast and kidney cancer in 2018. Ever since then, I've had things show up in my lungs - nodules, scars, smudges. None of them are mets. My oncologist says that nearly everybody has things in their lungs that we don't know about until we start getting scans and for the most part, it's just benign accumulations from breathing for several decades. So please don't assume it's cancerous unless and until they give you a definite diagnosis. Good luck to you and your mother.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited July 2022
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    fathea,

    Well, not entirely bad news! As Alice noted, nodules don’t always mean metastasis and I’m sure the doctors will be keeping on eye on them. I am a bit curious regarding proposed treatment. Tamoxifen is generally used for women who have not gone through menopause though it’s not unheard of. Most post menopausal women take one of three drugs classified as aromatase inhibitors ( either anastrozole, letrozole or exemestane). However, as I mentioned post-menopausal women taking Tamoxifen is not unheard of. I hope this helps you feel a bit more at ease. Excessive worry won’t change anything and as my dear late mother would say, Don’t borrow trouble!

    I’m about to leave to visit my daughter and family for a few days in the beautiful Napa Valley. Quite amazing considering I thought I would have died years ago which goes to show we never know what the future holds. Take good care.

  • fathea
    fathea Member Posts: 33
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    exbrnxgrl


    It has been a year and a half


    so my mom responded well to the Femera and after 6 months (April 2023) the PET scan shows shrinking of the tumor


    she did her annual scan today so I wish it will be NED this time

    it’s very stressful to do scans and just lots of thoughts is going on on my head right now


    so how are you doing so far ?