HealingWell
Search Close Search
☰

AFP 897 4 months post resection for HCC

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/27/2013 10:12 PM (GMT 0)
Has anyone had their AFP elevate after returning to normal post resection?

My husband had a 1.9 x 1 x 1.1 lesion removed from the left lobe of the liver. The pathology showed focal vascular invasion but the surgeon expected that it was completely curative. AFP returned to normal 1 week post resection

At our three month check up post resection, MRI of the abdomen came back fine, CT of the chest came back fine but AFP was elevated to 191. Oncologist had us return next day for a Pelvic MRI and another AFP. Next day she reported that the Pelvic MRI came back normal but AFP was now 212. The following week a PET scan was done and the PET scan only showed a very dim light up near the surgical site. Radiologist nicknamed "Eagle Eye" performed the ultrasound himself and did not see any suspicious activity where the PET scan indicated.

A week later we saw the Transplant surgeon that performed the resection. He had a lipiodol angiography ordered and he ran the AFP again. It was now elevated to 505.

The following week the angiography was done and it came back inconclusive. A week later they repeated the CT to look for remaining lipiodol which would indicate where the cancer was and it came back inconclusive again.

Back to the oncologist yesterday. She suggests waiting and repeating CT in 30 days. She stated that she believes there is HCC recurrence but they cannot find it. AFP yesterday was 897.

So to recap - AFP has elevated to 897 in 30 days. Abdomen MRI, Chest CT, Pelvic MRI, PET scan, liver ultrasound and two CT's of liver only have been performed in the last 30 days and cancer cannot be found. All of the doctors are telling me this is a rare occurrence and they all have different opinions on how to treat.

Has this happened to anyone else out there? I cannot find anything and I mean anything regarding this scenario. BTW we are being treated at Northwestern Memorial in Chicago.

Post Edited By Moderator (hep93) : 8/27/2013 9:53:31 PM (GMT-6)

Posted 8/27/2013 11:47 PM (GMT 0)
Hello Wife,

Welcome to the forum. I'm just helping out and wanted you stick around a bit until a moderator formally welcomes you and possibly helps you with your question.

It sounds like a real poser too, hope they get to to the bottom of it.
Posted 8/27/2013 11:52 PM (GMT 0)
Hello, Wife, and welcome to the forum. I am so sorry that your hubby is having problems post resection of his HCC. Did they do a chemoembolization prior to surgery? They usually try to shrink a tumor before proceeding with surgery. That was a small HCC, so it bothers me that they didn't try shrinking it by chemoembolization, radio-frequency ablation, cryotherapy, or even killing it with TheraSphere. Which lobe was it in?

I have NEVER heard of AFP in those ranges. In fact, I didn't even know that it was possible to go so high. I've had HCC twice....the first time a huge one of 12.5 cm x 11 cm. I think the highest my AFP went either time was 17 or 18. In fact, it's sitting at 13.7 now, due to hep C.

Does your husband have hep C? Has he been treated for it?

Due to these very high elevations of AFP, I do believe he has cancer elsewhere. Was the PET scan of his brain? His brain should be scanned. There should also be something they can do to see if cancer is in his bloodstream (aside from AFP.) If another MRI or CT of his abdomen is done, request that they use Gadolinium as the contrast medium. If there is cancer anywhere in his abdomen, it will light up like a Christmas tree...in green, I think. I'd never even heard of lipiodol--had to look it up.

We have another member who just received a transplant at Northwestern. Susie, isn't that where you received it?

Welcome again, Wife. I hope others will be able to offer additional suggestions.

Hugs,
Connie
Posted 8/28/2013 1:14 AM (GMT 0)
This is very worrisome and I'm glad you posted.

It seems he has a diligent and engaged medical team and they will keep on top of this.

Hoping for the best for you both.

Mama Lama
Posted 8/28/2013 2:06 AM (GMT 0)
Wife of a Sweetheart

I am a patient at Northwestern Memorial Kovler Transplant Center. My liver lesion grew over 2 cm in mid June of this year. My interventional radiologist Dr. Riad Salem recommended the TheraSphere treatment for it. Dr. Salem is world renowned for his successful use of this treatment for HCC lesions.

I qualified for exception points to be added to my meld score, bringing it to 22. I am blood type B and got an organ offer in early July, but the liver was rejected due to plaque in the vessels. I then had the planning angiogram in preparation for the TheraSphere. Then, it was decided to put the TheraSphere treatment on temporary hold as my lesion was only 2.1, my AFP was normal, it took nearly 3 years for the lesion to grow to this size, and I had already received an organ offer. On August 6, I got another organ offer and was transplanted on August 7, 2013.

Although, I did not have the radiation beads implanted, I know Dr. Salem has used this technique to successfully downsize HCC liver tumor(s). Dr. Salem also performed my TIPS procedure in 2011 to restore my portal vein for my eventual transplant. He is super confident which I like, and an excellent IR doctor.

Who is your husband's hep at Kovler. I see Dr. Ganger. Before I got bumped up to transplant in 2008, I saw Dr. Flamm from 2004-2008, and Dr. Ollinger from 1992-2004.

Post Edited By Moderator (hep93) : 8/27/2013 10:00:32 PM (GMT-6)

Posted 8/28/2013 4:01 AM (GMT 0)
Susie, it's spelled TheraSphere--no "s." Check it out on Google.

Thanks for your input.

Hugs,
Connie
Posted 8/28/2013 5:50 AM (GMT 0)
Hi wife of a sweetheart.

Welcome to the forum. I am sorry that your hubby is going through this. It seems like you have a great team of doctors taking care of your husband. It seems like they are determine to find the cause of the elevated AFP with a multitude of tests...which is a good thing.

Why didn't your doctors decide on chemo embolization (TACE) or TheraSphere (DEBS) to treat your husband's lesion? Did they determine that he is not a transplant candidate? What's his MELD score?

Please continue to keep us posted on your hubby.
Posted 8/28/2013 4:22 PM (GMT 0)
Wow - talk about quick responses - thanks to all of you for your insight; it is very comforting.

Worried daughter2 - His team is phenomenal. My husband has had Hep C and cirrhosis for the past 9 years. He has also been an insulin dependent diabetic for 20+ years. He does not have a MELD score because his bilirubin, creatinine and bun are all within normal range. His ALT & AST's are only slightly elevated; but considered great for his condition. His HCC characteristics did not fall into criteria range for UNOS either. For this reason, he is not a transplant candidate so the team at Northwestern felt resection would lead to possible cure. This afp elevation was completely unexpected by all involved in his case.

When the tumor was detected in 8/2012, his afp was 22 but each month it continued to increase until resection was done 4/2013. His last afp prior to surgery was 73. One week after resection afp was down to 16, one month after resection it was down to 11.

Received a call from the surgeon that did his resection yesterday. Their plan is to repeat chest, abdomen and pelvic CT scan again today as well as a bone scan. If this again does not show any metastases they would like to proceed with treating the left lobe of the liver with Y90 to see if that lowers the afp. If they can get the afp down low enough we will begin screening for living donor transplant as he will never qualify with UNOS. They told me not to get my hopes up though. They are assuming the HCC cells are in the liver because they have not been able to find them anywhere else. After the lipiodol angiography, the CT a week later still showed small traces of lipiodol throughout the left lobe. Although they have not confirmed - I believe they suspect some diffuse HCC cancer cells in that area that are not being picked up on any of the scans due to the cirrhosis.

Susie - Dr. Salem will be the Interventional Radiologist doing the treatment and both Dr. Kulik and Dr. Koppe are on our team as Hepatologists. Which doctors performed your transplant? Dr. Caicedo was the doctor that performed the resection and has been kind of the lead on my husband's follow up. Dr. Lewandowski performed his lipiodol angiography and Dr. Nemcek performed the Ultrasounds himself.

Connie - the PET scan was from head to thigh. I think the blood test to look for cancer in the blood is the CEA and that was also normal. When we get to the radiology department today I will ask what contract medium they are using and make sure it is the Gadolinium you mention.

Thanks again for sharing your experiences - sometimes you feel like you're going through this alone. HCC is so complex that no friends/family understand unless they have researched themselves. It always comforts me to read all of the success stories on these discussion boards and I was finally brave enough to join in yesterday. So glad I did.

Post Edited By Moderator (hep93) : 8/28/2013 1:39:08 PM (GMT-6)

Posted 8/28/2013 7:41 PM (GMT 0)
I believe the Y-90 is TheraSphere. Be sure to ask about using Gadolinium contrast. One would think they would have tried this previously.

Let us know the outcome. Glad you found us!

Hugs,
Connie
Posted 8/28/2013 8:22 PM (GMT 0)
Wife,

Dr. Caceido did my liver transplant. What a nice guy! I first became aware of him in 2011 when I attended the Illinois Kidney Foundation's Transplant seminar at the Westin O' Hare. He gave an overview on liver transplantation trends and discussed his Hispanic transplant program at Northwestern. I was the only pre- transplant liver candidate to attend the seminar becuz it was mostly geared to kidney patients. Wish American Liver Foundation would sponsor more education, but all they seem to care about is raising $. I did have lunch at the Liver table and met 4 people who were transplanted at Northwestern. I tried to pick their brains on what were the important things I should concentrate on during my wait on the UNOS list.

My AFP was always normal. I also had the CEA blood tumor test which was in normal range. My lesion had been monitored every 4 months since 2010 and did not grow over the 2 cm threshold until this June. It was caught by an MRI and my rising Alk. Phosphate level.

I was placed on the UNOS list in October 2010. My meld by labs was mired in the 15-20 range due to my excellent creatinine level which was always under 1. My bilirubin and inr fluctuated up and down with little rhyme or reason. In fact, I began to pursue dual listing at Indianapolis in June as they transplant at lower melds in the 11-18 range, and I feared I would never get transplanted at Northwestern. Then, my lesion grew;I got the extra meld points, and got transplanted at Northwestern in a flurry of activity from mid June to August. I was very fortunate.

Connie: thanks 4 the correction. I used to be great at spelling and punctuation, but HE robbed me of this. I have yet to get it ALL back, it seems. Therasphere is Y90.
Posted 8/28/2013 8:49 PM (GMT 0)
Thank you Susie,

This gives me hope. My family needs a miracle. Our son passed away suddenly this past November and then a week later we received a call that the tumor was found in a routine scan.

We were sure that resection would have been the cure and now this complication. We have 4 other children that are just waiting for me to make everything all right again. I am working 10 hours a day, researching 10 hours a day and sleeping for 4 if I am lucky.

Our entire family is very fond of Dr. Caceido, we actually have liked all of the doctors on our team with the exception of our Oncologist which I am trying to change.

We are on our way home now from scans & should know something tomorrow. Fingers crossed & prayers too that there are no metastases. I will update as soon as we know.

Connie: I was told that Gadolinium is used with MRI not CT at Northwestern.

Post Edited By Moderator (hep93) : 8/28/2013 5:56:02 PM (GMT-6)

Posted 8/28/2013 11:01 PM (GMT 0)
Wife,

Get some rest...you deserve it. Please keep us posted on when you will be returning to Northwestern. You can also email me directly if u prefer. My addy is in my profile.

Currently, I am scheduled to be back at Northwestern on Friday, Sept. 6 th for labs and staple removal and Wednesday, Sept. 25 for labs and my first post transplant visit to my hepatologist.

I live in Darien, Illinois which is about 20 miles southwest of downtown Chicago.
Posted 8/28/2013 11:52 PM (GMT 0)
Wife, you are correct...Gadolinium is the contrast used with MRI. Sorry, I was thinking he was having an MRI. If he does again, be sure to mention that contrast. Best of luck with his scans. And my sincere condolences on the loss of your son. You have certainly had your share of grief recently.

P.S. Stay away from Internet searches--too much incorrect, alarming information. If you must search, stay with this forum, the American Liver Foundation, and Mayo Clinic sites.

Hugs,
Connie
Posted 8/29/2013 6:31 AM (GMT 0)
Wife, Hi, I am Doni. I don't post a lot because I am a newbie to the site, just wanted to say I am so sorry about your loss and all that you have been going through. Hoping that they will get you some answers soon and things will turn out okay.

I was interested in all the information you shared about Northwestern. I live in IL about 120 miles south of you and we don't have any hepatologists here. A friend I made on a HCV site is encouraging me to try to get in to Northwestern. Her ex-husband is being treated by Dr Kulik for hep C and now HCC. She went with him for the TP evaluation and was very impressed by the whole team. From what you have said they do sound like an outstanding group.

Hope you are getting some rest somehow. Maybe coming here and having a place to talk will help you relieve some of the stress anyway.

Goodnight, doni

(Susie I emailed you, hope that is ok.)
Posted 8/29/2013 3:30 PM (GMT 0)
Good Morning new friends -

Just received a call from transplant regarding CT of chest, abdomen and pelvis. Results: no suspicious lesions detected. The images will be reviewed in the tumor conference today just to make sure nobody sees anything then next step is bone scan.

Susie: I am amazed that you are only 3 weeks post transplant and seem to be doing pretty great. We are downtown at NMH 2-3 times a week so there is a good chance that we can meet up after one of your appts. If that does not work out --- I live in Plainfield:) We are practically neighbors.

Doni: So that you know I am making this assessment based on comparison. My husband was being treated by Rush University from 2004 until February of this year. When the cancer developed, it became clear to me that Rush was not as pro-active nor aggressive as NMH. The tumor was first spotted in 7/2012. Our team did not tell us about it but ordered a CT in 11/2012. There was some debate going back and forth between our hepatologist and the interventional radiologist. The IR said it needed to be treated as he saw vascular invasion during an angiogram he performed. The Hep wanted to wait for it to grow so that my husband could be put on transplant list. Because they could not agree, I took my husband to NMH on 2/8/13 - the resection was done on 4/24/13. The difference between Rush and Northwestern are night and day. As far as Hepatologists, we have seen Dr. Green, Dr. Koppe and we will be changing to Dr. Kulik now. I have spoken with Dr. Morris Sherman (researcher for United Health Network, one of the largest cancer research institutes in North America) regarding my husband's case and he recommended Dr. Kulik. He actually referred to her as an "expert" in HCC.

Mayo Clinic has also offered to take a look at my husband so I am having his images copied and sent to Dr. Gores over there.

In the meantime, can anyone recommend an oncologist other than Mary Mulcahy at Northwestern that specializes in liver cancer?

Post Edited By Moderator (hep93) : 8/29/2013 8:33:15 PM (GMT-6)

Posted 8/30/2013 2:38 AM (GMT 0)
Wife, I have been seen at Mayo FL since 2006 and have always been seen in their Transplant Center. I've seen hepatologists, a top interventional radiologist, PAs, and pre and post Transplant Coordinators. Even though I've had HCC twice, I've never been seen by an oncologist. Maybe they had one consult on my case at some point, but I'm not aware of it. So perhaps that's one specialist that your hubby doesn't need to see. (A case of too many hands in the broth.)

Hugs,
Connie
Posted 8/30/2013 12:44 PM (GMT 0)
I think you may be right Connie. She was added to our team and we definitely have different objectives and it is clear that we do not care for each other. We have 2 Heps, an interventional oncologist, interventional radiologist & a transplant surgeon - I think they can handle it.

Thanks for telling me what I think I already knew but confirmation is a powerful thing;). It is always helpful when someone tells you what you are already thinking!
Posted 8/30/2013 12:52 PM (GMT 0)
Wife,

Can't help you w/ oncologist right at the moment. I was never referred to one. I was immediately referred back to Dr. Salem to discuss the Therasphere treatment.

A neighbor of mine, who has lung cancer, is under the care off an oncologist at Northwestern. I will ask her who her oncologist is. You can also go to nmh.org and search oncology doctors and search their fields of expertise. If you need help with this, let me know, and I will be happy to help you.

If you enter an email address in your profile, we could correspond privately as well as on this forum.

Well, it is time for me to go have my blood work done! Take care and my best regards.

Post Edited By Moderator (hep93) : 8/30/2013 1:06:03 PM (GMT-6)

Posted 8/30/2013 1:02 PM (GMT 0)
Susie -

I think Connie may be right and an oncologist may not be necessary this point.

I have edited my profile so you should be able to view my email address now.

Good luck on the blood tests today.
Posted 8/30/2013 7:10 PM (GMT 0)
Liver cancer is handled differently than other cancers. For example, chemo has to be targeted to the tumor itself and not given systemically via an IV or orally. Should various scans and tests reveal there is cancer elsewhere in the body, particularly in the brain or blood stream, then perhaps an oncologist would be consulted or brought in to offer his thoughts on treatment options. This is especially true if the tumor they find outside the liver is a primary cancer and not a metastasis of liver cancer.

Best of luck, Susie, with your labs.

Hugs,
Connie
Posted 8/30/2013 7:43 PM (GMT 0)
Back from Labs. 3 sticks to get a lousy 2 vials of blood. yikes! I left quest with Coban pressure bandages on right elbow and hand and left elbow. My veins tend to roll and many times dry up as they are trying to take blood. I always try to go fully hydrated so they will have better luck. Not so lucky today. My hand was still bleeding under the skin when the tech removed the needle. So I had a little bulge of blood under the skin before she put the pressure wrap on. I took off bandages 1 hour after draw. Now, 5 hours later my hand is turning a lovely shade of black and blue. Upside is my next draw is not until Tuesday because of the Holiday.
Posted 9/9/2013 8:30 PM (GMT 0)
Hi All -

Last week was definitely crazy. So CT of chest, abdomen and pelvis came back with no suspicious focal lesions, bone scan came back with no evidence of metastasis. Tomorrow my husband will be getting his firs Y90 TheraSphere treatment to see if treating the entire left lobe will bring AFP down. I am afraid to even hear what the AFP is tomorrow.

I have done hours and hours of research, alot of it done on ncbi and cannot find anything even closely related to our situation. The closest thing I see is possible cell dissemination during resection or diffuse HCC cancer cells. Usually with an AFP that high, there is a tumor that can be seen.

Of course the worst I read is that elevated afp so soon after resection indicates poor prognosis and agressive disease.

Anyone else give it anymore thought?

Post Edited By Moderator (hep93) : 9/9/2013 3:41:40 PM (GMT-6)

Posted 9/9/2013 9:43 PM (GMT 0)
Well, I think it sounds pretty good. Maybe his AFP elevation is just a quirk.

Please only put 2 spaces between paragraphs to save room. Thanks!

Hugs,
Connie
Posted 9/9/2013 11:22 PM (GMT 0)
www.medhelp.org/posts/Hepatitis-C/ARE-THE-ALPHA-FETO-PROTIEN--MARKERS-FOR-LIVER-CANCER-A-RELIABLE-INDICATION-/show/510688

Wife, this is from MedHelp. I don't know but it may answer some of you questions. Good luck!
Posted 11/1/2013 8:14 PM (GMT 0)
I know it has been a while since I posted any updates. On 9/10 my husband was treated with Y-90; AFP on this day was 1550. We waited 30 days and returned to NMH for labs, MRI and consultation on 10/14. AFP decreased slightly to 1304, which based on the rate it had been climbing over the past 2 months was a positive sign. The Y-90 halted the progression for 30 days and actually showed a slight decrease. Because imaging has not been able to find any tumors (they have done multiple US, CT, MRI, PET, Bone & angio) the radiation was blindly placed along the surgical resection line. On 10/18 I received a call from transplant surgeon; MRI done on 10/14, showed a 4 x 4.2 tumor in the upper portion of the 4th segment in the left lobe. NMH recommended another Y-90 treatment, this time targeting the newly found tumor with the hope that it would reduce AFP and downsize tumor so that transplant could be fast tracked.
On 10/22 & 10/23 we made the trip from Chicago to Rochester for a consultation with Dr. Gores (Walter Peyton's doctor at Mayo). After a day and a half of their own diagnostics, we met with Dr. Gores for his recommendations. During this meeting, he informed us that their labs showed AFP at 2134 and CT did not show anything suspicious. I then told him to take a look in the 4th segment. He left the room to pull up the CT and consult with the radiologist. When he returned, he did confirm that they now see the tumor I pointed out but that they disagree with the size being reported by NMH. They believe the tumor is closer to 8 cm. He also informed us that at their center they would recommended treating with TACE rather than Y-90 to try to downsize tumor and reduce AFP. He stated that consideration for transplant - cadaver or live donor - at this time would be considered unethical at Mayo clinic. At Mayo clinic, the cancer would have to be "controlled" for 6 months before consideration for transplant would be made. He did state that Northwestern was a competent center and that Dr. Salem & Dr. Lewandowski are considered the best in the world at Y-90. He recommended that if these doctors feel they can control the cancer using Y-90 than he would do what they suggest.
This past Tuesday, my husband received his second treatment of Y-90. On the day of this treatment, AFP was now elevated to 1941. While he was receiving the treatment, I began the screening process to hopefully become his live donor. Next week I will complete the evaluation and the transplant center has already started screening other family/friends as well. Our surgeon would like to know that a donor is in place by the end of November when we return to NMH to see if this Y-90 treatment was successful in reducing the AFP.
I welcome any comments, questions, opinions, suggestions, etc.
✚ New Topic ✚ Reply
12