Mom, 69, Recent HER2 Pos Diag ....But....

mreuter_1979
mreuter_1979 Member Posts: 6
edited October 2017 in Just Diagnosed

My family especially my mother sits in a state of confusion tonight. 3 weeks ago, she was diagnosed with HER2 pos breast cancer at Albany Medical Center . It was found present in lesions they found on her Liver from on a biopsy. It was concluded that she had Stage 4 Breast Cancer based on Pathology Report.

Today she had an MRI of here Breasts. No cancer was found by a radiologist! Just two small benign cysts! She is preparing for a Kidney biopsy to check 1 lesion on that organ next week but we are very confused by the news. We don't know whether to be happy or not since this is still confusing. Trying to finding reasons to be positive right now.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    Mreuter-

    Wow, that all sounds very confusing indeed! It's a bit unclear, was she diagnosed with breast cancer after a biopsy, or was the biopsy only done on the lesions on her liver? We can't imagine the confusion your family is going through, that's quite the change of direction. We hope further testing proves to be more conclusive, and that you all get some definitive answers. Either way, please keep us posted!

    The Mods

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  • mreuter_1979
    mreuter_1979 Member Posts: 6
    edited September 2017

    Thanks Mods for reply..


    The Breast Cancer was confirmed from initial Pathology report after Liver Biopsy. Low levels of Oestrogen positive receptors were discovered and Very specific HER2 was determined primary driver leading them to conclusion of Breast Cancer.

    Biopsy was requested after Mom showed blood in urine 4-5 weeks ago and went to Urologist where they did ultrasound and saw what appears to be nodules or lesions on liver, quite a few and one on Kindney. Liver cancer was ruled out as primary immediately however following Biopsy.

    They are performing Biopsy on Kidney next week.

    My mother almost fainted when she got this news today (yesterday now) about nothing on the breasts post MRI. The waves of emotions and turmoil are tremendous and for my Dad and I as well. She has and we have been talking to family members and friends about this over past 2 weeks.

    Trying to stay in faith in all this and that hopefully this is all a good sign. I recall the Oncologist saying at initial appt after Pathology report post liver biopsy, to my Mom that it's encouraging that her strength and overall condition were good despite the Stage 4 Breast Cancer diagnosis.

    The waiting when it comes to getting tests scheduled is also painfully long.



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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited September 2017

    So sorry to hear this news. It is so odd that they did not find anything in the breast. I believe Her2 responds well to Herceptin which may be good news for your mom. Hoping all goes well!

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  • muska
    muska Member Posts: 1,195
    edited September 2017

    Mreuter, I am very sorry about your mom's diagnosis.

    "Occult primary" cases are rare but they happen. If you search for "occult primary" you should find some information and threads.

    I am not a specialist but I think this will not matter for her treatment.

    Sending hugs toyour mom and family.

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  • Tara17
    Tara17 Member Posts: 386
    edited September 2017

    - its tough enough to hear cancer, and then worse to have confusion. Am sending healing vibes to your mother and best wishes to your family. My understanding is that herceptin is also used for her 2 positive stomach cancer ---could it be worthwhile taking a look at her stomach with an endoscopy test ? A PET scan, if not already done, may also be useful. All the best. Herceptin is a game changer for HEr 2 positive cancers , so do take some reassurance from the fact that there will be good treatment options. A second opinion from a larger cancer center may also be worthwhile

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  • mreuter_1979
    mreuter_1979 Member Posts: 6
    edited September 2017

    Hi Tara. No knowledge or evidenceof stomach cancer.

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  • Rose2017
    Rose2017 Member Posts: 13
    edited September 2017

    My hugs and prayers for your mom... for you and your whole family...Lets put our lives in God hands because He can do great things in our lives...Thats what I say to myself everyday...

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited September 2017

    mreuter, I am also sorry for your dear Mother and you (her family) as you struggle to understand the threat to her health. Here is an article published in the Journal of Surgical Research about occult primary bc: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830668/

    and a meta-analysis from the Annals of Surgical Oncology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922044/


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  • mreuter_1979
    mreuter_1979 Member Posts: 6
    edited September 2017

    While it is a possibility that it is occult primary it is extremely rare. It could be just as possible that the pathology report was wrong. Who knows. Perhaps I should just have faith in the Docs. Waiting is so hard and I don't want my mom to stress out unnecessarily. Hard to know what to do sometimes.

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  • marijen
    marijen Member Posts: 3,731
    edited September 2017

    I have/had an occult primary. They still can't find it 2 1/2 years later. Was on letrozole immediately which might have killed it. One positive axillary node. ER+PR+HER-2.

    Your Mom's stage IV dx is because it metastisized. What grade is it? How many lesions? How big are the lesions? There is a liver mets topic, you should go there. Let me know if you have questions. Be glad to answer them. Your mom should be on an aromatase inhibitor now. IMO.


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  • mreuter_1979
    mreuter_1979 Member Posts: 6
    edited September 2017

    My mother just received a call from her Oncologist. Dr has been in consultation with many Doctors. They THINK now "potential" Bladder Cancer as HER2 can show there too apparently. Occult primary doesn't sound like it's being considered. Regardless if HER2 confirmed, then Herceptin would I HOPE(!) be effective!

    Biggest lesion they saw on first MRI Abdomen was 3cm and then just smaller ones. Only 1 on Kidney., 2cm. My mother also had endometriosis when I was in HS pretty bad. I haven't Heard the Doctor mention this but I wonder if it is uterine lining that spread throughout body that is showing on her liver and kidney and maybe they eventually became cancerous(maybe). Hard to say but my godmother had a friend that this occurred in.


    More when I gather new news. Prayers and thanks so much for all of your support :-) Currently this is being investigated by NYOH office at Albany Medical Center. It's a good hospital from what aim gathering BC they also are a research and education hospital with the attached College.

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited September 2017

    Here is a link that may be helpful. Your mother is in my prayers. Hope all goes well!


    https://www.sciencedaily.com/releases/2014/01/140121151649.htm

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  • mreuter_1979
    mreuter_1979 Member Posts: 6
    edited October 2017

    UPDATE to MODS and community:

    Great news from Oncologists last night on 10/3/17.

    Additional tests recently done including biopsy at kidney site did not show kidney cancer or Bladder cancer, it did in fact show breast cancer as well, just waiting on results to see if it was HER2 pos also.

    Bone Scan- also negative

    CT scan of Abdominal confirmed nothing wrong with Bladder, no sign of lesion or thickening of wall or irritation of the 2 ureters leading from kidney to Bladder.

    I acknowledged with the Dr. that this remains best diagnosis considering no cancer actually found in thoracic region including breasts! = Total mass of cancer is less which is good! No explanation though about why the breast cancer cells migrate or perhaps never were in the breast to begin with but show up on liver and kidney. I quoted "Occult" but apparently she didn't like that term per se.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830668/#!po=22.9730

    Further questioning and research done by my mom and myself begged the Q if these lesions were any connnection to my moms prior bad case of endometriosis in the late 80s. We've read articles about the linkages that can show up much later in women's lives who were affected around child bearing years or after late 30s or early 40s where uterine lining spreads throughout the body that could if remaining at sites where surrounding organs /tissues were originally affected, turn cancerous, however our Oncologist doesn't necessarily believe is true in this case.

    Mom will start a cocktail of Chemo paklopaxyl + Herceptin + perzumab (address hormone portion) in 3 weeks via a Port.

    In meantime we are heading to NYC to Memorial Sloan Kettering for 2nd opinion within next 2 weeks.

    Asked about Pet Scan. Oncologist reports she doesn't like to use it typically if she has already targeted the main issue.

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