Checking for cancer: I’m nervous for my results and MELD score

Posted by krissycanada @krissycanada, Jan 23, 2023

Back story, i am 34 years old. I used to be a heavy drinker. It almost killed me last year, my MELD score was 38 when I went into the hospital. Almost a year later, they are checking my whole body for cancer. My current MELD score is 19. But I dont still don’t qualify for a liver transplant. I’m still very jaundice. I have a mri and ct scan this Friday. Does anyone have an advice? I have Been married for 12 years and have 3 sons.

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Hi @krissycanada, welcome. I moved your message to the Transplant Support Group (https://connect.mayoclinic.org/group/transplants/) and the Cancer Support Group (https://connect.mayoclinic.org/group/cancer) so you can connect with other members easily, like @contentandwell @alfonso22 @kathycaudle.

It can be scary waiting to go for an MRI and CT scan, but you’re doing the right thing. If there is cancer present, they want to find it as early as possible when it is treatable. This is your first step towards better health.

Krissy, are you worried about the testing procedures and what to expect? Or is the nervousness more about what they may find?

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@krissycanada, I want to reach out across the miles and offer a gentle hug, to let you know that I understand what you must be feeling right now. In my own experience, I was waiting for a liver transplant when I was faced with a possible cancer of bile ducts (cholangiocarcinoma) diagnosis and was ineligible for a liver transplant until I could be tested as cancer free. I felt that my life and my family's life was on hold while I waited and wondered and feared for my/our future. It is not easy to wait and wonder. And Colleen said it best when she said that if there is cancer present, it is best to find it early as possible.

Krissy, My advice, is to take each day as it comes. Try not to focus on the "What if's". It is okay to cry. It is okay to be afraid when undergoing tests and scans; it is okay to ask questions about and during tests and scans. Take someone with you. Always ask when to expect to get results and a follow-up appointment. Get phone numbers. Take notes. If found hope and support through my church family.
Krissy, I'm thinking of you. Let me know how I can help you.

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@rosemarya

@krissycanada, I want to reach out across the miles and offer a gentle hug, to let you know that I understand what you must be feeling right now. In my own experience, I was waiting for a liver transplant when I was faced with a possible cancer of bile ducts (cholangiocarcinoma) diagnosis and was ineligible for a liver transplant until I could be tested as cancer free. I felt that my life and my family's life was on hold while I waited and wondered and feared for my/our future. It is not easy to wait and wonder. And Colleen said it best when she said that if there is cancer present, it is best to find it early as possible.

Krissy, My advice, is to take each day as it comes. Try not to focus on the "What if's". It is okay to cry. It is okay to be afraid when undergoing tests and scans; it is okay to ask questions about and during tests and scans. Take someone with you. Always ask when to expect to get results and a follow-up appointment. Get phone numbers. Take notes. If found hope and support through my church family.
Krissy, I'm thinking of you. Let me know how I can help you.

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Thank you that means a lot!

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@colleenyoung

Hi @krissycanada, welcome. I moved your message to the Transplant Support Group (https://connect.mayoclinic.org/group/transplants/) and the Cancer Support Group (https://connect.mayoclinic.org/group/cancer) so you can connect with other members easily, like @contentandwell @alfonso22 @kathycaudle.

It can be scary waiting to go for an MRI and CT scan, but you’re doing the right thing. If there is cancer present, they want to find it as early as possible when it is treatable. This is your first step towards better health.

Krissy, are you worried about the testing procedures and what to expect? Or is the nervousness more about what they may find?

Jump to this post

The results. I’ve been through this testing before last year. And nothing was found. But my billirubin is up. I’m jaundice again. But I am almost 1 year sober from drinking. I’m terrified there is no going back.

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Like I said Im more nervous about results now. I just had an aunt get diagnosed with stage 4 lung cancer and she passed within a week. And she was young. My 17 year old had leukemia when he was five( remission)

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Krissy. I have had a diagnosis of Cholangiocarcinoma which grew to Hepatocellular Carcinoma. My Alcohol Abuse put me at high risk for the cancers I got. I'm 3 years sober now. The cancer had spread too far in my liver for surgery or radiation. I am too old for a transplant. I took Chemotherapy Treatment 3 times a month for a year. First I was on Paclitaxel then Carboplatin which I tolerated well. I was then placed on a more aggressive treatment plan of Cisplatin and Gemcitabine. The Cisplatin is too hard on my kidneys so it was stopped. The chemo worked to keep the cancers from spreading and growing as my most recent PET scan showed. I'm now taking Imfinzi Immunotherapy once a month. The side effects are the same but not as strong. I feel healthy and just signed for a Mindfulness Meditation class. A positive attitude and researching my cancers and treatments helps with the " what if's ". My Spirituality and Prayer give me hope. Feel free to contact me on this forum. John in Houston.

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@colleenyoung

Hi @krissycanada, welcome. I moved your message to the Transplant Support Group (https://connect.mayoclinic.org/group/transplants/) and the Cancer Support Group (https://connect.mayoclinic.org/group/cancer) so you can connect with other members easily, like @contentandwell @alfonso22 @kathycaudle.

It can be scary waiting to go for an MRI and CT scan, but you’re doing the right thing. If there is cancer present, they want to find it as early as possible when it is treatable. This is your first step towards better health.

Krissy, are you worried about the testing procedures and what to expect? Or is the nervousness more about what they may find?

Jump to this post

It is common to be nervous but you are in the rightbhospital. Do everything you are told to get ready to be approved for transplant.
I will be 2 year post transplant and am doing great. Be positive, stay and get as strong and healthy as possible.
At Mayo, we have a pre and post transplant support group that meets weekly on Tuesdays at 11am.... not sure if you are able to join at that time... but the group helps each other through our individual journeys.

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@krissycanada

The results. I’ve been through this testing before last year. And nothing was found. But my billirubin is up. I’m jaundice again. But I am almost 1 year sober from drinking. I’m terrified there is no going back.

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Congratulations on you sobriety milesone. At what point will you qualify to be actively listed?

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@bobscozz0927

It is common to be nervous but you are in the rightbhospital. Do everything you are told to get ready to be approved for transplant.
I will be 2 year post transplant and am doing great. Be positive, stay and get as strong and healthy as possible.
At Mayo, we have a pre and post transplant support group that meets weekly on Tuesdays at 11am.... not sure if you are able to join at that time... but the group helps each other through our individual journeys.

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@bobscozz0927 -Bob it is great to hear that you are approaching your 2nd transplant anniversary!
Where are you that you have access to transplant support groups besides Mayo Connect?
Are they opened to returning transplant patients or just for newly transplanted patients?

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