Hepatocellular Carcinoma

[RolloMay]

Whenever I go to see a doctor I feel like I never get positive news. The first oncologist I saw (once) told me I had 12 months to live.

Any similar experiences?

[WayCas Patient]

Well, my doctor told me I had 6 months. Here I am 5 years later. I have been told you should not ask and the doctor should not tell. But, I just had know. Glad to prove them wrong.

Good luck and God Bless.

Wayne

[RolloMay Patient in reply to WayCas]

Wow. First, congratulations! Do you mind if I ask how you did it. Your testimony/story provides hope. Thanks for responding.

[WayCas Patient in reply to RolloMay]

Rollo,

Hope your are still doing well. Let me give you my HCC journey and hope it helps. I was diagnosed in June 2017 with Stage 4 inoperable HCC. The cancer was in my right lobe and measured 11cm with metastasis to right lung and L4 and portal vein thrombosis. I had no symptoms or predisposing factors such as alcohol, tobacco or drugs. Doctors contributed to fatty liver disease which is a catch all for everything.

Doctors gave me 6 months but said if I wanted to give it the "Old College Try" they would do it. This included prayer and a positive attitude. I took on the challenge. Within 2 weeks Y90 was started followed by Sorafenib (Nexavar). During the next 3 months I lost 60 pounds and had an esophageal varices bleed out needing 2 liters of blood. By November 1, I was ready to call it quits. All the nausea and pain had taken it toll. I told my Oncologist lets stop everything. He said he felt the other treatments had prepared me for something new just approved for the liver. That was Opdivo, immunotherapy. I had to have a port and treatment was started. After that I had 53 rounds of Opdivo over a 2 year period. This was not easy but I continued to improve. I stopped Opdivo in January 2000 due to the fact there was little data about prolonged use on other organs. I was stable and my cancer now measured 7cm and no metastasis was seen on MRI. Portal vein still a problem.

Since January 2000. the road has not been easy. I have had 1 reoccurrence which was ablated. Multiple complications with my gall bladder due to stones formed by bile buildup. Gall bladder could not be removed because the cancer had pushed the liver around the gall bladder. So, ERCPs have been necessary 11 times. Fairly not invasive. I still have MRI every 3 months and live with Scan Anxiety. The road has been bumpy but with faith and a positive attitude it has been worth taking on the challenge.

Today, I would say my quality of life is good. I just had my 71st birthday and saw my 14th grandchild born. HCC will test you but remember you always win. Best wishes and my prayers are with you.

Wayne

[RolloMay Patient in reply to WayCas]

Sounds like your journey has been difficult yet a miracle of sorts empowered by positive attitude and hope. God bless.

[WayCas Patient in reply to RolloMay]

A true miracle. Didn't want to discourage anyone. Even survival is a challenge but but worth it. Thanks

[Curly_Girl Caregiver]

My husband really disliked the first liver doctor that he saw and refused to go to her again because of her negative attitude. I think it makes a difference to have health professionals who have a better bedside manner.

The oncologists he saw were all much more upbeat. His cancer was not curable and we knew that, but they celebrated with us for every stable test result.

He never did ask how much time he had - neither of us was interested in that, because we felt it was an individual thing that can't be predicted.

In any case, I'm sorry that you are experiencing this. I know it's not always possible to switch doctors, but if you can do so it might not hurt!

All the best,

Wendy

[RolloMay Patient in reply to Curly_Girl]

Hi Wendy, I did switch. The doctor, I believe meant well, but was literally unable to focus on any positive. I experienced the same with the next doctor, until finding my current doctor who is great. It has a way of taking away hope, which is a lifeline.

[MichelleL_BlueFaery]

Hi RolloMay,

First off, thank you for sharing your post. I'm so sorry to hear that you are going through this. I agree with Curly_Girl and hope that you are able to find the answers you need in this community. 🙏 Please let me know if there is anything Blue Faery can do to help support you during this time. 💙

Best wishes,

Michelle

[RolloMay Patient in reply to MichelleL_BlueFaery]

Thank you so much.

[AndreaWilson_Founder Partner Editor Caregiver]

Hello RolloMay,

It's not always easy or an option, but you are allowed to fire your oncologist. With my sister, we fired her first pediatric oncologist because he was an insensitive asshole who refused to look at her as an individual. All he saw was death. Her second oncologist was much better but due to limitations at Children's Hospital, he wasn't able to or willing to try other treatments or help us find a clinical trial. Her third oncologist who worked closely with a pediatric oncologist (required for insurance to approve the transfer) and a hepatologist. They triaged her care so well and respected her #1 wish--to be in the hospital as little as possible.

Keep in your mind--the doctors work for you. They are members of your team. They may even be coaches on your team. But you are the captain and owner of your care. HTH.

~Andrea

P.S. If it helps, I'm happy to send you a copy of my medical memoir that details my sister's journey with HCC. Some find it helpful; others not so much. It's also available on Kindle Unlimited. Learn more here: betteroffbald.com

[DancingEyes63 Moderator Caregiver]

I'm so sorry that you had that kind of experience but glad you were lucky enough to find an oncologist you like. Jimmy had a similar experience with his first one. Told him due to his cirrhosis and diagnosis of End Stage Liver Disease on top of advanced HCC, there wasn't any use starting any treatment because he would be dead in a few months anyway. We didn't go back and he was wrong. The oncologist we went to next was very willing to do treatment but unfortunately he didn't seem to realize when to STOP. He was totally ignoring what the treatment was doing to Jimmy's liver and his body despite the test results that should have been red flags. Thank God I called his GI and sent a picture of how swollen his feet and legs were or I'd have lost him a year before I did. That's when I discovered there's a balance somewhere between the one that won't even start or think about treatment and just gives up on you and the one that will continue treatment until the treatment kills you.

By the way, Jimmy was also on the Opdivo immunotherapy and it was shrinking the tumors. Unfortunately his liver couldn't take continuing the treatment but I am a believer in the immunotherapy treatment and that it can buy you time. Also Andrea's book is great.

Sharon ♡