Newly Diagnosed with Metastasis--HELP

andydebparker
andydebparker Member Posts: 4 Member
edited May 2022 in Kidney Cancer #1

I need some words of wisdom and hope ... my husband's MRI, CT scan, and ultrasound show a 14x14x10 cm presumable renal cell carcinoma, extensive metastatic disease in right and left liver lobes, metastasis in T11 and T12 spine, metastasis in 4+ nodules in the lungs, and suspicious tumor thrombus in inferior vena cava. He meets with an oncology urologist next week and gets a biopsy of the lung nodules in a week or two. We are beside ourselves and emotions are out of control. Can anyone with some or all of these conditions please weigh in?

😳

Comments

  • eug91
    eug91 CSN Member Posts: 471 Member
    #2

    Hi andydebparker-

    I'm so sorry you had to join us like this, but I'm glad you did. We know what you're going through and we're here for you if you have questions or just need to vent.

    First piece of advice - bring a notepad or smartphone with you to your husband's doctor's visits, and use it to write down questions you have for your doctor and to write down the answers you get back. Information will be coming fast and furious, and you're only human and it will be hard to keep up with everything. So write it down so you can refer back to it.

    Next - don't trust Dr. Google. The internet will show you a lot of misleading numbers and statistics. Take everything you find there with a grain of salt. There are plenty of advances made in new treatments for kidney cancer, and survival stats from just a few years ago will be out of date.

    And thirdly - if you haven't already, consider signing up at the forum at smartpatients.com. It's another active message board where you might find more advice/perspective from people who are in a similar situation in terms of mets and spread. As you move forward with specific treatments, they could be a valuable resource.

    This is awful news to learn and it's totally normal to be beside yourselves. Once the shock wears off, you're going to do great. We're with you.

  • andydebparker
    andydebparker Member Posts: 4 Member
    #3
    https://csn.cancer.org/discussion/comment/1697091#Comment_1697091

    Thank you for the quick reply! My husband doesn't want to research info., just rely only on his doctors, but I know there are many options and opinions.

  • Biner
    Biner CSN Member Posts: 137
    #4
    https://csn.cancer.org/discussion/comment/1697092#Comment_1697092

    Yes best option trust doctors,not internet.Kidney cancer not death sentence, we know many people who living with years and decades

  • Deanie0916
    Deanie0916 CSN Member Posts: 628 Member
    #5

    Andydebparker so sorry about this news. Eug91 always has great advice. I agree with having some form of notes, you can record the conversation on your phone too if allowed. There's so much information and scary terms. We are here for you. There are so many people here and at smart patients who are living full hopeful lives even with advanced stages. God bless keep us updated.

  • Averygirl
    Averygirl CSN Member Posts: 17 Member
    #6

    Andydepparker I absolutely know what you and your husband are going through. My husband of 53 years has also been diagnosed with RCC. He has a. Small tumor 3 cm in his right kidney and some enlarged lymph nodes. Early on it has been a struggle as to the doctors getting a biopsy and our oncologist could not identify what kind of cancer it was nor a treatment plan. We were overwhelmed. The oncologist met with his tumor board and they went over the case to decide what cancer and the best treatment. A unanimous decision was No surgery for now it is renal cell and they are going to start immunotherapy with two drugs. I hope and pray it is a positive outcome. We haven’t started yet. They have not said but I believe it has spread. My husband is strong and somehow you will find the strength. It hard very hard. I wish you the best. You can do this.

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