Diagnosed with HCC 10/2024

[Mercy3682]

I am 51 years ,Diagnosed with HCC measuring 1.6×1.3×1.3. in october 2024.I have not started any treatment yet. But the plan is for me to wait for the tumor to grow to at least 2mm then they will start treatment, probably ablation or cryotherapy. During this time,they will put me on the transplant list.So the end treatment plan for me is to get a transplant.will be starting the work-up to get on transplant list starting December 30th.

Then if the tumor is where they want it to be they will start treatment. overall I feel good, mild headaches especially at night and mild fatigue,some bloating not sure if this is related to the disease process

[AndreaWilson_Founder Partner Editor Caregiver]

Hello Mercy,

Have you gotten a second opinion? That's something we can facilitate. It's really important you are being treated by someone who sees HCC every day (perhaps you are). I don't like that they're waiting for the tumor to grow.

~Andrea

[bwpickard Caregiver in reply to AndreaWilson_Founder]

Mercy, agree with Andrea! You are blessed right now with very early diagnosis which is when you want to find/treat HCC so I would seek another opinion and Andrea knows many specialists in HCC. Bonnie

[Mercy3682 Patient in reply to bwpickard]

who can I see for a second opinion please. I spoke with my transplant coordinator today and she said the team will not touch the tumor until it is at least 2mm. and then they will start treatment which will give me points to qualify for transplant

so I am confused, my tumor marker was 2.2 (Aft)

[Mercy3682 Patient in reply to Mercy3682]

I start the evaluation for transplant on the 30th of December and they plan to do another MRI in February and then start treatment.so I am so confused.

I am in nebraska

[Mercy3682 Patient in reply to AndreaWilson_Founder]

refer me please, foe a second opinion i am based in nebraska

[DancingEyes63 Moderator Caregiver]

Hi Mercy, I'm with Andrea and Bonnie about a second opinion and making sure it's someone who has lots of experience with HCC. Unfortunately the three of us are experienced regarding how important both of those can be and also how great it is that it's in the early stages.

Sharon

[Mercy3682 Patient in reply to DancingEyes63]

please recommend someone for me please. I am based in omaha NE

[Mercy3682 Patient]

Thank you for the advice.please can you facilitate me getting a second opinion?

their rational for waiting for it to grow to at least 2mm is so i can qualify for a liver transplant

[Mercy3682 Patient in reply to Mercy3682]

the solid organ transplant unit requires the tumor to be at least 2mm before one can be put on the transplant list, and while waiting for a donor, they start treatment. please advice me on what to do. I am confused

[DancingEyes63 Moderator Caregiver in reply to Mercy3682]

Mercy, I'm sure Andrea will get back to you ASAP.

Sharon

[Mercy3682 Patient in reply to DancingEyes63]

ok waiting.Thank you.

[Mercy3682 Patient in reply to DancingEyes63]

ok

[Mercy3682 Patient]

still waiting please

[Foxy1977 Moderator Patient]

Hi Mercy,I know you are stressed out and waiting for more information. But, I'm suggesting that you try to put it aside and enjoy your holidays! This doesn't seem to be an aggressive form of hcc and a second opinion might just confirm the original plan. Transplant is the standard of care for early diagnosis. Doctors do not wish to have patients freaking out, so I'm sure they are doing right for you. You can also ask your team to help coordinate a second opinion.

I'm speaking from a personal & professional point of view. I was an oncology social worker for 13 years before I was diagnosed 12/16/23. Unfortunately for me, the original catscan showed more than 20 tumors & the largest was more than 10cm. My cancer grew in a few weeks when I was admitted for lifesaving chemo treatments. I then began almost 2 years of palliative treatment. I'm thrilled to say it has worked beautifully shrinking them & quieting them down.

The most important thing I did for myself was work on my mindset. That's why I hope this helps you to feel a little better. Try not to waste time stressing & try to enjoy the holidays as best as you can.

Sending love & strength,

Kara

[Nickle1960 in reply to Foxy1977]

Check with your insurance they will often cover second opinion. I suggest md Anderson, Cleveland clinic . Mine actually paid for two second opinions

[Mercy3682 Patient in reply to Foxy1977]

Thank you for your words of encouragement, I start work for transplant this Monday the 30th. And then if the tumor has grown to where they want 2cm at least then treatment will begin while waiting to be added to the transplant list. I get anxious every now and then but I am trusting God that everything will be fine. keep praying for me as I pray for you

[Mercy3682 Patient in reply to Mercy3682]

work-up i meant

[Mercy3682 Patient in reply to Mercy3682]

Are you taking any supplements? if yes which ones.I was thinking of taking some supplements while waiting to start treatment but I am confused because there are so many out there

[Foxy1977 Moderator Patient in reply to Mercy3682]

I take milk thistle because research shows it helps heal the liver. I just take a cvs brand version. I do also take elderberry to boost my immune system. Just make sure to discuss with your team.

I'm sure getting started with workup Monday with help you feel better. It's hard to know you have something, but not do anything about it. Plus you'll have direct contact with folks who can further alleviate your anxieties. Good luck!!

[Mercy3682 Patient in reply to Foxy1977]

Thank you so much

[DancingEyes63 Moderator Caregiver in reply to Mercy3682]

Hi Mercy. I'm so glad that you will be hopefully getting more information and answers this week. I remember how hard it was waiting for Jimmy's treatment to start and even getting into the oncologist for the first time. We were basically in limbo for several months. I'll be sending food thoughts and prayers your way tomorrow. Sharon Dixon ❣️

[Mercy3682 Patient in reply to DancingEyes63]

Thank you Sharon. how is your husband doing? what kind of treatment is he getting?Let's keep praying for each other and ask the ALMIGHTY God to show us mercy. .Will keep you posted how tomorrow goes hugs your way.

[DancingEyes63 Moderator Caregiver in reply to Mercy3682]

I'm afraid that I lost Jimmy two years ago. It's ok. You didn't know and I still talk about him (and to him ❤️) all the time. I've spent the time since then focusing on being an advocate for other caregivers and patients dealing with HCC. It helps give me a purpose. Unfortunately his cancer was already stage 3b when he was diagnosed. Lots of balls were dropped I'm afraid. So that's another reason I'm an advocate. Hopefully I can help others avoid the same pitfalls we dealt ran into. I certainly appreciate the prayers and will be praying for you tomorrow. Hopefully you will get the information you need to make informed decisions. I think that is one of the biggest issues we run into with HCC. So many times we're asked to make decisions without having the information we need to make them. So that often leads to just blindly following what the doctor recommends. Been there, done that. I've got to get busy and do what's necessary regarding my own health so I'm not flying blind. So I certainly appreciate prayers and hugs. I'll be watching to see what you find out about your situation. Sharon Dixon ❤️

[Mercy3682 Patient in reply to DancingEyes63]

so sorry to hear that.

[Foxy1977 Moderator Patient]

Also: your afp levels are in the normal range and low normal too. My highest one was 4400. Now thanks to treatment I'm down to 7.9 🎉

[Mercy3682 Patient in reply to Foxy1977]

glad to hear your markers are down. what kind of treatment did you have?

[Foxy1977 Moderator Patient in reply to Mercy3682]

I have a crazy 44 hour emergency chemo infusion in the hospital at the beginning to help reverse the situation enough to start my regular immunotherapy regimen. But again, I am palliative only, so it might be very different than what you'll be doing. My treatment is buy time & extend my life. Yours is for cure 🎉, so it's probably different.

[Mercy3682 Patient in reply to Foxy1977]

sorry to hear that. May God grant you mercy during this difficult time. stay strong. Thank you for responding to my question

[Foxy1977 Moderator Patient in reply to Mercy3682]

Thank you, but really I'm good. My cancer has been a blessing: I always look for bigger meanings & the positives in situations! I declared long ago that I would defy the statistics and I am 🥰Please keep us posted!

[DancingEyes63 Moderator Caregiver in reply to Foxy1977]

You remind me of my husband Jimmy. He ALWAYS had such a great attitude and never let the HCC or things that happened related to it make him bitter. Just saw everyday as a Blessing. ❤️

[DancingEyes63 Moderator Caregiver in reply to Foxy1977]

I'm so thankful that there are some treatments to help buy some time. More time means the possibility of making it until the next better palliative treatment is discovered or hopefully, one day, a cure. ❣️Sharon Dixon ❤️

[Mercy3682 Patient]

That is the mindset I am abiding by.thank you again. will you posted