My husband has HCV/end stage cirrohsis due to a blood transfusion back in "82". He is a non-responder to interferon and has done quite well for many years. However our hepatologist has been agressively looking for liver cancer due to a steady elevation in is AFP. My husband has been monitored for 22yrs, with blood tests ever 3mths, sonogram every 6mths until this past year. His doctor stated he will only be performing MRI's for now on due to the steady elevation in his AFP. He is on the liver transplantation list but is currently not active.
His last MRI had the following results:
Techinique: Study performed on a 1.5T magnet. Standard departmental liver protocol was performed. Axial and coronal images of the liver and upper abdoment were obtained utilizing a variety of pulse sequences including fast spin echo and gradient echo techniques. Both T1 and T2 weighted images were obtained. 2D multiplanar sequence was obtained. Dynamic acquisition was performed in axial plane following the intravenous administration of 20 cc of gadolinium without an adverse event.
Liver: Mild hepatic steatosis unchanged. Slightly nodular cirrhotic appearance to the surface of the liver.
Anterior right hepatic lobe subcapsular punctate hypervascular focus measuring 9 mm appears not significally changed.
1. Segment 8: Small ill-defined arterial enhancing lesion measuring approximately 8.6mm, new.
2. Segment 5: Inferior tip of right hepatic lobe small arterial enhancing lesion measuring 7mm, new.
Portal Vein: Patent. Hepatic veins: Patent.
Remainder Of upper abdomen: Splenomegaly measuring 13.4 cm in length unchanged. Normal appearing pancreas, gallbladder, bilateral adrenal glands and kidneys. Normal cliber abdominal aorta. Mildly prominent perisplenic lymph node measuring 13 mm in short axis. Mildly prominent retroperitoneal lymph nodes, the largest is a left par-aortic lymph node measuring 12mm in short axis. Trac perihepatic and intraperitoneal ascites. Diverticulosis as seen on prior. Asymmetric hypertrophy of the right psoas muscle again visualized. Bilateral total hip arthorplasties again noted.
Impression: Two new punctate foci of arterial enhancement in the liver parenchyma. Previously noted punctate hypervascular focus in the anterior right hepatic lobe unchanged. These do not meet MR criteria for heptocellular carcinoma. Continued followup recommended.
2. Unchanged splenomegaly, mild hepatic steatosis, and cirrhosis.
Ok what does all this mean? I understand some of the medical terms but not all.
Are lesions cancerous or can they turn cancerous. What questions should we be asking the doctor and what should our next step be?
The impression is - These do not meet MR (magnetic resonance) criteria for heptocellular carcinoma (HCC).
"Are lesions cancerous or can they turn cancerous"?
No. But continual monitoring should be done.
Lesions are abnormal growth on the surface of any body organ. In other words, they can also be called as tumors, that could be both benign and malignant. Benign lesions do not really cause harm to the health while malignant tumors can be dangerous. Lesions on liver are benign, more often than not, and they are less complicated than malignant ones.
"What questions should we be asking the doctor and what should our next step be"?
Your doc is responsible for communicating the results to you. Talk to him and ask him to explain what is going on.
To learn more about HCC here is a link to a good article.
What all the text means...(you seem you know most if not all of this)
He has mild steatosis. Also known as fatty liver disease (FLD), is a reversible condition where large vacuoles of triglyceride fat accumulate in liver cells
He has Cirrhosis.
He had 1 lesion that has not changed since last image.
He has 2 new lesions.
He has an enlarged spleen.
He has Diverticulosis. The condition of having diverticula in the colon, which are outpocketings of the colonic mucosa and submucosa through weaknesses of muscle layers in the colon wall.
Ascites. Fluid build up in abdomen.
He has a enlarged muscle that controls movement of the hips.
He had a hip replacement.
What do you mean by "a steady elevation in is AFP". What are the numbers and the dates they were taken?
"He is on the liver transplantation list but is currently not active". Why?
If he does get liver cancer he will need a transplant soon. Having HCC bumps you up on the list.
What is his MELD score?
Thank you all very much. We have an appt. with his hepatoligist at the transplant center a week from Friday.
Hectorsf - Dr. called and moved the MRI up by 2 mths because of the AFP results and told us he was looking for HCC.
His AFP has has gone from 8 - 47 in 5 mths (8, 20, 26, 47). He just had another Liver panel and AFP Monday and we will get the results when we see doc. His meld is currently at 11 not bad, highest was 14. He is considered inactive because he has been doing so well, will discuss with doc about becoming active again. Wondering if we should ask for a PET scan because the lesions are so small as to completely rule out HCC.
Glad to hear you have an appointment soon. It sounds like your doc is keeping tabs on the possibility of HCC. I believe a PET is not used in the diagnosis of HCC. A CT scan with dye like your husband had before is the best way to view the lesion. If the doc thinks it is HCC they can do a biopsy to confirm.
A little background:
2-8% of patients with cirrhosis and HCV are diagnosed every year. Generally, normal levels of AFP are below 10 ng/ml. Moderate levels of AFP (even almost up to 500 ng/ml) can be seen in patients with chronic hepatitis. Moreover, many patients with various types of acute and chronic liver diseases without documentable liver cancer can have mild or even moderate elevations of AFP.
The sensitivity of AFP for liver cancer is about 60%. In other words, an elevated AFP blood test is seen in about 60% of liver cancer patients. That leaves 40% of patients with liver cancer who have normal AFP levels. Therefore, a normal AFP does not exclude liver cancer. Also, as noted above, an abnormal AFP does not mean that a patient has liver cancer. It is important to note, however, that patients with cirrhosis and an abnormal AFP, despite having no documentable liver cancer, still are at very high risk of developing liver cancer. Thus, any patient with cirrhosis and an elevated AFP, particularly with steadily rising blood levels, will either most likely develop liver cancer or actually already have an undiscovered liver cancer. An AFP greater than 500 ng/ml is very suggestive of liver cancer. In fact, the blood level of AFP loosely relates to (correlates with) the aggressiveness of the liver cancer.
My AFP levels change often between about 50 and 120. I can't remember when AFP was less than upper 40s.
Best of luck to you both. Let us know what happens when you see the doc again.
Hang in there!
Welcome to the forum, though I’m sorry that you and your husband are dealing with this turn of events. Sonograms are useful in identifying the presence of lesions, but have little sensitivity in identifying benign lesions from malignant tumors. The difficulty in diagnosing HCC is that liver cancer has many variations in tissue structure and progression – what is true of one person with hcc is not necessarily true of another.
MRI has good sensitivity in detecting hcc, but it is far from 100%. Your husband’s doctor mentioned ‘only doing MRI’ from now on, but it might be worthwhile to discuss the possibility of also doing CT-Scan, which also has good sensitivity in diagnosing hcc. I believe PET Scans can have some use, but I’m not familiar with their relative sensitivity. Nonetheless, additional methods of imaging may be helpful in reaching a diagnosis.
The pathway in the development of hcc is not well understood, and there is contention among the medical field as to whether or not dysplastic and macrogenerative nodules are precursors to hcc. As a result, most liver lesions smaller than 1 cm are considered not ‘meeting the criteria’ for hcc. The transplant center docs should be able to clarify their guidelines and criteria – I would suggest writing down all your questions and bringing them along with you to the appointment next week.
Most centers don’t start putting candidates on the TP list until MELD reaches the mid-teens or higher. It’s good that your husband has done well. However, it is definitely wise to start reconnecting with contacts and ties to the transplant center – if the circumstances present a diagnosis of hcc for your husband, transplantation is considered the best ‘cure’ option for hcc.
The routine surveillance protocol for suspected hcc is imaging at intervals no longer than every 3 months along with AFP and liver function tests. Though not yet standard practice, there are a few other blood tests that may be helpful in determining the status of your husband’s lesions. You might want to ask your husband’s doctors if they think any if the other newer tests would be helpful in making a diagnosis – there are two other blood tests (AFP L3 and DCP) that research has shown may be helpful in hcc diagnosis.
My husband also has cirrhosis, and has been fighting HCC for over 3 years – he had resection for a tumor almost 12 cm (that’s 120 mm) in size back in 2007 and has done well, but was just diagnosed with multiple recurrence this past summer and had chemo-embolization done. Just wanted to let you know you’re not alone, and I’d be happy to help with any questions you might have. My very best wishes to you and your husband moving forward.
Eureka254: We are very fortunate to have a wonderful hepatologist at a transplant center who is also the director of the liver transplantation team. My husband has been with Dr. G. for 10 yrs and we could not ask for a better doc or team. He is monitored every 3 mths (liver panel and AFP) with a dobbler ultrasound every six mths. Until the last 2 yrs which he alternates the dobbler and the MRI. He also has a endoscopy every 2yrs and a colonoscopy every 3 yrs (family history of colon cancer). Brian was born with congenital hip displasia and had his hip rebuilt in '82' we weren't even married a year. He had a very rare blood reaction and almost died (allergic to a protein in everyones blood). That gave him almost 2yrs living pain free. Finally 3yrs ago he was in so much pay he could not even walk, his hips had deteriated to the point that he had a large whole in his pelvis. Our hepatologist had told us for years he could never get his hips done because of the risk of liver failure. So my husband lived with the pain (never took pain meds or even an aspirin) and never complained. I have watched him for years in severe pain and still manage to have a positive outlook. Finally, Dr. G. and my husband decided it was time to get the hips done due to his quality of life (quality vrs quantity). He had severe blood reactions even with his own blood (only used his own this time) but made it through it all.....thank God. The most wonderful day in is life was a little over 2 yrs ago when he walked our only daughter down the aisle without crutches or a limp. There was not a dry eye in the church...including my daughter and myself. We also had our first vacation together as a family last year; 2 wks in Aruba at a friends condo. It was absolutely fabulous!!!
We are having our first grandchild in May and we are praying he will be ok. As I said, he never complains and is always up however, this time he told me he feels he is starting to get sick. Although, I am trying to keep positive his intuition has always been right. I always keep strong for him and the kids but sometimes I wish someone/something would take this disease away and give me my husband back.
Sorry for rambling and thanks for being such good listeners.
It sounds like your husband's got the will he'll need to beat this, and the positive attitude will go a long way. I'm really glad to hear that your husband has enjoyed a good quality of life the last couple of years (woohoo to Aruba!), and I have NO doubt that he'll be a beaming and proud grandpa come May!
Seems like you have a top-notch doc who's staying right on top of things, and that's an essential against this disease -- and remember that hcc diagnosis these days is no longer a death sentence. Sometimes knowing too much, like seeing a rising AFP, can cause our intuitions to run a little wild. As example, it happened a couple of years ago to my husband, AFP climbed from 10 to 49 in 6 months, then went back down: false alarm. If it helps at all, my husband's AFP was 45 last year in August, and hit a high of 545 in September this year, which made then led to a confirmed diagnosis for hcc, but he's still maintaining a good quality of life. Don't ever lose hope, and don't give up. And while you're being strong for everyone else, remember to be good to yourself... make sure you take care of yourself as well as you take care of others. ~eureka
Eureka is 100% right.
"Don't ever lose hope, and don't give up. And while you're being strong for everyone else, remember to be good to yourself... make sure you take care of yourself as well as you take care of others". These are the best words of advice anyone can offer.
Attitude can make a HUGE difference in outcome. I've seen people pull through because of attitude when the facts said they didn't have a chance.
Thanks so much for your support. I am really not a negative person; used to be a motivational speaker....go figure. I am just having a few self pity days (that is all I allow myself) and needed to vent. I will be fine by tomorrow.
Just seems like everytime we have something wonderful happen in our lives someone is sick. My husband and mother were both very sick when both my children were born. Mom ended up in a nursing home for 12yrs before she passed. My children only new her as the sick grandma and my mother-in-law passed 4 days before my daughters wedding. Although my husband and I love each other very much and our marriage is the same (30yrs in April) we now live in seperate homes. He decided last year that he did not want me to watch him in pain and slowly die. So, the juggling from house to house is starting to get to me but I want him happy...he deserves it. Ok, my poor me days are over and I will trek on.
Thanks so much for listening and I will let you know how all turns out next week.
Update: Appt. with Doc on Friday. Doc called today with AFP results from last week. Ordered another MRI before appt on Friday because AFP went up again. Keeping positive but getting a little nervous. Hopefully, all will go well or at the least we will know where we stand. The worst is not knowing. I am a very organized person and I would like to know what plan 'B' will be.
Keep us in your prayers please.
I'll be wishing and praying for the best for you and your husband this Friday. It's always wise to be vigilant of any possible lesions in the setting of cirrhosis, but hopefully your husband will have the best of results on imaging. I've heard of AFPs rising into the 200s in folks with cirrhosis with no apparent tumors, so keeping positive is the right frame of mind. Take it one step at a time... and I understand the organization thing :) . Keep in mind though: sometimes no news is good news. Wishing you and your husband the best outcome. ~eureka
Saw doc today basically can't tell anything because they are too small. However, his afp has risen from 55 to 69 in eight days at this rate......
The following is a preliminary of the mri taken today which below is in addition to the previous:
There are no lesions which meet criteria for HCC. Multiple
arterially enhancing foci, likely vascular shunts, some of which
are new. Largest measuring 9 mm in segment 5. Consider continued
What I don't understand is the AFP. Doc was very concerned about the continueous rising however, he is waiting 3mths and then doing a ct scan. At the rate of the AFP rising shouldn't we being doing test sooner?
"There are no lesions which meet criteria for HCC..."
That's a very encouraging interpretation -- I'm really glad that it's good news!
In the presence of chronic liver disease, fluctuations in AFP are quite the norm, rather than the exception. Unfortunately, AFP really doesn't always provide a whole lot of information, and a rise of 14 points over the course of a week or two is not usually considered significant. I think your husband's doc is being appropriately cautious because your husbands' AFP fluctuations have been increases, but it could simply be coincidental to the time of blood draw, especially since the increases are not large. Usually an elevating AFP does not raise concerns unless values are above 200 and continue to increase, and AFP is usually not considered indicative of tumor until >400.
As far as doing testing sooner, I can definitely understand that train of thought, but more of the same testing sooner may not serve much utility, as I've learned from my husband's situation. It's certainly natural to want as much information as possible, but sometimes it's a case of only time will tell. The waiting can be very difficult sometimes, but the best thing to do is to consider the next 3 months a reprieve, and perhaps a much needed break for you and your husband. Though it's absolutely necessary to be vigilant, don't spin your wheels worrying about something that's not there and may never happen. Remember: statistically, odds are in your husband's favor that he does NOT have hcc.
I'm so very pleased that your husband's still in the free and clear. The 3-month follow up will come around soon enough. Try to relax and enjoy this time and the upcoming holidays...
Thanks Eureka for your kind words and support.
The only reason we are concerned is because the doctor is. During our visit and before we had the afp results back he told us he did not want his afp to go up again. He only did an afp test today because he was hoping he could catch it going down. He stated in my husband's case it is very suggestive of hcc because of his baseline for the last 8yrs. Also, at our transplant center you can only have 3 tumors and if only one is larger than 3cm you no longer qualify for a liver transplant.
Doc also said the same thing, we just have to wait and see. He also stated that they usually can't tell until the tumor is between 11/2 - 2 cm.
With that being said your right and I am getting way to ahead of myself.
We have now put it in the back of our heads and are going to enjoy the holidays with family and friends.
May you and yours have the happiest of holidays!!
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