New diagnosis training to get info from actual people not just doctors

[Caregiverdaughter]

My mom just received her diagnosis the doctor was very cut and dried 6 months to a year boom surgery not an option because of portal vein involvement. Is this the typical diagnosis is this realistic time frame what are other people's experiences

[Wifey2021 Caregiver]

So sorry to hear about your mother. If you read through some of the stories here, quite a few people that were given 6 months to live are still around years later. There are many treatments which can help our loved ones. My husband was diagnosed with liver cancer last November, no operations available, and we are on our way for a Y90 treatment this morning if we can get there in the ice storm. Nobody knows how long any of us will live. There is a wonderful resource guide on this website with a wealth of information to help guide your family through this difficult time. Praying for you and your Mom. Linda

[Caregiverdaughter in reply to Wifey2021]

Thank you for replying. It's just nice to be able to connect with other people in the same situation. I've been reading some of the stories and they seem encouraging. The doctor just made it feel so final it's nice to hear that there is a glimmer of hope. And yes none of us know the day we will pass so everyone should treat everyday as a treasure.

[bwpickard Caregiver]

The cut and dried is so hard to hear! Your mother is lucky to have you as an advocate for her. Is the diagnosis HCC with portal vein involvement? My husband’s original prognosis was 3-6 months with this diagnosis but he immediately had a procedure by interventional radiology called Y 90 which shrunk his dominant tumor and oncologist also started him on Lenvima. Liver function numbers are always a consideration when they look at treatment options but fortunately my husband’s liver function numbers were good.Since that time there is a new gold standard drug that’s an infusion called Avastin/Tecentriq. If your mother is seeing an oncologist I would ask specifically if she might be a candidate for any of the medication’s that are considered palliative which means they won’t cure but extend her life and any of the interventional radiology options. You might even want to consider a second opinion. The combination of the two gave my husband 27 months for which we were very grateful. Prayers are with you! Bonnie

[Caregiverdaughter in reply to bwpickard]

Yes it is HCC with portal vein involvement.Thank you for your answer it helps to know what is out there for treatment options.

[bwpickard Caregiver in reply to Caregiverdaughter]

I encourage you to print and read the resource guide as it is a wonderful wealth of info regarding possible treatment options you can bring up to your mom's MD. Best to you both!!

[spazure Caregiver]

Hello and welcome to the forums.

Sorry to hear about your mother.. many of us understand how you're feeling right now, so I'm glad you found us. When my father was diagnosed, I felt completely alone in the world until I found Blue Faery.

To answer your question: The doctors are often off by quite a bit.... in either direction, when it comes to those time estimations. The only constant I have found is that cancer is unpredictable and even if you have daily scans to keep track of growth (uncommon and expensive), the time estimations should be taken as just that - very loose estimations based on experience with similar cases, and not a time frame set in stone.

One thing I will note, however, is that the mindset of the patient is huge. Once they emotionally give up, the body doesn't tend to stick around much longer. While one can't necessarily think themself cured, a positive outlook can absolutely help maximize both the time and the quality of the time they have left.

[Curly_Girl Caregiver]

It's funny, my late husband's doctors (he had a few) never gave us a timeline, and we also never asked. He was diagnosed with inoperable HCC (portal vein involvement) in March 2018, and he had quite good quality of life for another 3-1/2 years using what they call palliative treatment - Y90 and oral chemo drugs (he was not able to have immunotherapy because he'd had a bone marrow transplant back in the early 90s).

He stayed positive and active (we went to the gym four days a week like clockwork) and I think that helped too. He did have very good liver function (he was diagnosed via bloodwork for something else, he had no symptoms at the time) and I'm sure that played into it as well.

Sending many good thoughts to your mom, you, and your family!

Wendy in Michigan

[Caregiverdaughter]

Thank you all for your support. Today we met with the oncologist and learned that it is actually Cholangio Carcinoma and it is aggressive almost double the size in a month now at 8.9 centimeters. Having a family history of NASH is a large underlying factor, and the little bit of the liver that isn't taken up by cancer is very deteriorated by cirrhosis. No surgery as she is so weak they don't think she would make it thru, no radiation as she really doesn't have any healthy cells to regenerate. Chemo possibly but as agressive as it is they aren't confident it would stay ahead of the growth. As much as it breaks my heart it's down to giving her whatever she wants to live the time she has left however she wants.

[DancingEyes63 Moderator Caregiver in reply to Caregiverdaughter]

Hi. I'm so sorry y'all are having to go through this. Cancer is terrible and liver cancer is one of the worst. My husband has HCC but he also has Cirrhosis, Hep C, and end stage liver disease so more killing his liver than just the cancer. They found the lesion in December 2020. His GI immediately scheduled a DEB-TACE procedure which slowed the growth of largest tumor. First oncologist we saw said no point in treatment because it was hopeless, he was already dying. We sought a second opinion and he was started on Lenvima which controlled the growth for awhile. Found out in December that the Lenvima has quit working, massive tumor growth filling one lobe completely. Said we're looking at 2 to 4 months unless immunotherapy can slow growth down again. He's trying it so hoping to gain more time. When he was diagnosed it was already advanced so the year we've already had is a Blessing. It's hard but we've found that just try to make the most of whatever time God gives us. This is a wonderful place for support. We're all here for you. Sending love and prayers. ❤️❤️🙏🙏❤️❤️

Sharon Dixon

[Caregiverdaughter in reply to DancingEyes63]

Thank you. Love and prayers for you both too.

As hard as it all is have the previous moments over the next months are a gift.