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6708370 tn?1471490210

Reaching out to my old hepper friends to see who has developed liver cancer

I have been diagnosed with liver cancer. It's the reason why we have all had ultrasounds and MRI since our bout with Hep C left our livers in a dangerous way. I would love to connect with someone who is facing or has faced the same, pretty dire, prognosis
6 Responses
683231 tn?1467323017
I think I’m one of the few still hanging around and I don’t really have any insight for you on this. All I can do is send you my best wishes and for you to know you're in my thoughts
Avatar universal
I actually don't know as my hepatologist sort of fared good bye after my last undetectable PCR.  My PCP had me do one more PCR about 2 years after Tx and was still good.  My biopsy had shown level 1-2 fibrosis and my enzymes have always been normal, even while HCV positive.  A couple of times recently I had an acute pain in the liver area and have wondered. So sorry to hear about your news, you went undetectable?
1 Comments
Those of us who were diagnosed with liver cirrhosis (F4) even though cured of hep c remain at elevated risk and need to continue to be followed by a liver specialist to monitor for the development of liver cancer.

Since you were only F1,F2 you would not need additional follower up monitoring post hep c cure.
Avatar universal
I was also recently diagnosed with HCC, 8+years after clearing HCV.  The tumor is 2cm, and I’ll be undergoing an ablation procedure this Wednesday.  It’s done by an interventional radiologist, and he is optimistic that he can destroy it completely. Unfortunately, I’ve heard that once your liver has a tumor, it’s likely to create new ones.
I really thought that this was in the rear view mirror,  and that I’ll live with this damaged liver for a long time,  but I am grateful that my hepatologist insisted on regular MRIs to monitor things.

My hepatologist thinks that the ablation will work, and if another one pops up, we’ll treat it the same way. This diagnosis will also give me extra MELD points, so I’ll move up on the transplant list.

Hang in there. As awful as this new battle is, there are tre
atment options that have been successful. I’ll share my experiences on this road that we’re on, and hope that you’ll do the same.
Good luck!
el
2 Comments
Thanks for your response! I have 2 small tumors in my liver, both less than 2 cm. Only one is growing and has grown from 8 mm to 14 mm in the last year. Because I also have cirrhosis, surgery is not an option for me to remove these tumors.

There are several different paths of treatment proferred by my doctors at the moment including Ablation with Radiofrequency and Chemo-embolization. Both of these treatments could cure the cancer but have a high recurrence possibility (50%)

So the treatment that my doctors keep returning to is transplant. A Big procedure that has good outcomes for the most part but I don't see how I could compete with others currently on the liver wait list. My MELD score is quite low (12) and my tumors are small.

So my doctors have suggested I wait to see if the tumor continues to grow. If the tumor gets too large, I am ineligible to be listed.

But if the tumors are removed but return, I may not be able to wait out the list. This is exacerbated by my age - currently 65 but once you reach 70, you're not considered transplant eligible.

This is adding up to a lot of stress for me. There are currently 17,000 people waiting for a liver in the US.

I value your opinion, shared experiences and advice. Thank you
Just returned from 1 month post procedure meeting with the interventional radiologist... Seems as if the ablation worked, but they are concerned about another lesion that now shows signs of being HCC. They are recommending Y90 treatment for this tumor because it is close to the lung and they are concerned  that the ablation will damage lung tissue. Looks like I’m in for an adventure.  

Have you and your docs decided on a path? For what it’s worth, I think that being proactive and dealing with the tumors is better than letting them grow.   I’m 66, so we are in the same boat transplant wise. I’m currently listed at a New York hospital, but am considering trying to also get listed in a different state.

Sorry that we are in the same boat, but I appreciate the company.
206807 tn?1331936184
I check in and scroll through every now and then but not many famililiar names left. I haven't had Liver Cancer but 6 Bi-Passes and 2 Strokes. I have no way of knowing if it was related to the tx. but, I can say life never returned to normal .
1 Comments
Had the procedure, and the doc was able to ablate the tumor. Unfortunately, I developed post surgery urination problems that have not resolved. I am living with a foley catheter and may now need prostate surgery.
163305 tn?1333668571
I haven't been on here for ages. Not sure if having a liver transplant changes things but my liver and I are quite well..
Avatar universal
Just returned from 1 month post procedure meeting with the interventional radiologist... Seems as if the ablation worked, but they are concerned about another lesion that now shows signs of being HCC. They are recommending Y90 treatment for this tumor because it is close to the lung and they are concerned  that the ablation will damage lung tissue. Looks like I’m in for an adventure.  

Have you and your docs decided on a path? For what it’s worth, I think that being proactive and dealing with the tumors is better than letting them grow.   I’m 66, so we are in the same boat transplant wise. I’m currently listed at a New York hospital, but am considering trying to also get listed in a different state.

Sorry that we are in the same boat, but I appreciate the company.
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