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Posted 7/19/2013 2:53 AM (GMT 0)
Yesterday was not a good day for me. I had a CT scan 14th of June, and through if I had no news from the doctor, that was good news. So I never called him to find out the results of my CT scan. Well yesterday he called me three times before I answered my cell phone. I talked with him about an hour about the CT scan. He told me that I had liver cancer. I have one tumor the size was 1.5cm. Now he wants it to get bigger so I can get a liver transplant sooner. ( Oh, I have hepatitis C and decompensated alcoholic cirrhosis of the liver.) My biggest problem is telling my sister. She worries about both her brothers, it makes it hard to tell her. What should I do???

Post Edited By Moderator (hep93) : 7/28/2013 1:50:28 PM (GMT-6)

Posted 7/19/2013 3:00 AM (GMT 0)
Tell her

Fess up

This stinks

Transplants save lives

Good luck

MamaLama
Posted 7/19/2013 3:07 AM (GMT 0)
Welcome back, retired12. I'm sorry for this latest bit of news, but it will get you closer to transplant. Are you being seen at a transplant center yet? I think you should start the pre-transplant evaluation. While your tumor is small at 1.5 cm, you would still get an automatic boost to your MELD score to 22. Then 3 points for every 3 mos. on the list. A tumor of 5 cm would be past the size limit to qualify for TP. You can receive chemoembolization to shrink the tumor if it starts growing too close to 5 cm. But the first step is getting a thorough evaluation. Where would you get your TP? You mentioned alcohol. When did you have your last drink? You will need 6 months of DOCUMENTED attendance in AA or approved counseling before you would be considered for transplant. If you have long-term sobriety, it won't be an issue. Also, if you smoke or do drugs, that would disqualify you.

I don't think much of the doctor waiting so long to give you CT results. You have to learn to be proactive. If they don't call you in a week or so, call them! And get copies of all lab work and scans. Is this doctor a primary care doc or a hepatologist? You need to be under the care of a hep doc at this time. And question everything you don't understand. Have you read the info in the folder at the top of the page, entitled Hepatitis Resources? There are lots of answers in there.

I think you have more important issues right now than whether to tell your sister. I'd wait at least until you are going through your evaluation before saying anything...if you can manage that.

Hugs,
Connie
Posted 7/19/2013 5:38 AM (GMT 0)
Retired,

Sorry you have to go thru the horrors of this disease. If I were you I would tell sis and then maybe she can help you get thru the eval period. Some of your appts require another person to be with you.

Where in the country are you located. Some areas have a larger pool of livers than say CA or the NortheAst. Being retired you may want to think about going elsewhere if you live in one of the areas with liver shortages. So it would help us to know whereabouts you are,

Stay strong. You have a tough road ahead but light at the end of the tunnel :)

I'm actually surprised you could hide symptoms from your sister this long. Best of luck to you. Keep us posted
Posted 7/19/2013 7:54 AM (GMT 0)
I haven't hide the hcv or cirrhosis of the liver from.my sis. I just haven't told her about the cancer tumor that showed up in the CT scan. I got my wife and my sis as support for the transplant when I get listed. I have completed all the requirements except SMOKING. I hate this more than the liver disease. Oh I'm in Georgia and the average meld score for transplant is 25, My sister is on vacation in Myrtle Beach SC. rright now. That's why I don't want to tell her. Why mess up her vacation now, when there is nothing she can do for me now? My next appointment is 16th of August. I think that is why my doctor called me, it takes 20 days of no nicotine to have a negative result on my test, so I'm not disqualified for the transplant. I've gone two days now, and I got my two granddaughters 9 and 13 watching me real close.

Post Edited By Moderator (hep93) : 7/19/2013 1:18:24 PM (GMT-6)

Posted 7/19/2013 12:00 PM (GMT 0)
Connie,

In my case my tumor had to be 2cm or larger to qualify for the meld exception points. Otherwise, I would have had my points nearly 3 years ago.

Retired,

I found out my tumor grew to 2.1 cm on June 13th. I was already listed at a tx center and have received one offer. Liver turned out to be not acceptable. They transplant in Chicago 22-25 with my blood type B. They are monitoring my lesion by MRI right now, but if it starts to grow faster, they plan on doing radioembolization. it targets and kills the tumor and is said to have less side effects than chemo embolization.
Posted 7/19/2013 1:12 PM (GMT 0)
Well that's the reason, she's on vacation. No sense in spoiling it for her unnecessarily.

I feel your pain on the smoking issue, but if you can handle liver disease, you can do this. If you get a new lease on life you want to do ALL you can not to disappoint those precious grandchildren. Think how proud they will be :) But mostly do it for yourself.

Take one urge at a time, fight it off. It WILL go away. Keep doing that and you will be golden. Do you like jigsaw puzzles? Those are great to leave around when the kids are there. I guarantee you will get hooked on them too. The Springbok puzzles are by far the best. Never bend or break and they lock in tight. Just a suggestion.

Good luck to you and please come back with updates :)

Post Edited By Moderator (hep93) : 7/19/2013 1:20:24 PM (GMT-6)

Posted 7/19/2013 7:23 PM (GMT 0)
Retired12, will you be going to Emory for transplant? You might consider being dual listed at Mayo Jacksonville (FL.) They have a short wait time there.

Susie, I wasn't aware that there is a size limit for HCC in order to get additional points. Mine were always large and fast-growing. I wonder if that's due to the type of hepatitis?

Hugs,
Connie
Posted 7/19/2013 8:44 PM (GMT 0)
Don't think it has to do with the type of hepatitis. it is a requirement of the Milan Criteria for exception points. My hep always told me I would have a shorter wait to transplant if my lesion grew to 2cm or more. He told me that they award the exception points because they they want you transplanted not for the tumor to grow over 5cm. tongue

yeah :-) :-)
Posted 7/19/2013 9:05 PM (GMT 0)
@ Hep93...when my mom was diagnosed with HCC, the tumor was 9mm, that was in June of 2012. Her meld at that time was 12. The ONLY way her meld would be able to jump to a score of 22 was once the tumor hit 2cm. It didn't grow to 2cm until she was scanned again in November. It was only when the HCC tumor grew to 2cm, that my mom was given the exception points/meld of 22. Then, 3 months later her score jumped to 25 in February and thankfully, she was blessed with a new liver in April. Tomorrow, she will be 3 months post transplant :-)

I wonder if that differs (meld/exception points for HCC) depending where in the country you are listed?

@ Susie...my mom also had to wait until the HCC grew to 2cm. It grew from 9mm to 2cm in less than 5 months. Our hepatologist had told us that HCC typically doubles in size between 3-6 months. If I remember correctly, your HCC took years to grow...ate they sure its HCC and not a regenerative nodule? Did you ever have a biopsy? Fingers crossed you get "the call" soon!!!

@ retired12...I understand you being hesitant to tell your sister about the HCC. My mom didn't tell my dad and brothers until 4 months after she was diagnosed with the HCC. First, she was scared of their reactions and scared that they would be upset/depressed. Second, her doctors didn't want to treat the HCC tumor until it was 2cm because they wanted her to get the meld of 22 (to be higher on the list), so she made a choice to not tell them until the tumor reached the 2cm mark. I agreed with my mom's decision...we come from a very close family and was also scared to see my dad's and brother's reactions. They actually handled it well, once they of course shed their tears and had a ton of questions, etc. Everyone handles it their own way and you will know when the time is right. Keep up the good work on quitting smoking...you can do it!!!
Posted 7/19/2013 10:27 PM (GMT 0)
Worried daughter,

Th exception points are the same across the country. After 3 months, I will get 3 more points if I have not been transplanted. That's would be September 25.

It was diagnosed by MRI but also, re confirmed during my liver angiogram on July 10th.
Posted 7/19/2013 11:36 PM (GMT 0)
Sorry I didn't state my question clearly. What I meant was whether the growth of a liver cancer depends on the type of viral hep one has...nothing to do with the UNOS requirement. Since Susie has hep B, I was wondering if a tumor grows more slowly in HBV than HCV, since my tumors grew quickly. The last one went from 2.7 to 4.9 very quickly.

Hugs,
Connie
Posted 7/20/2013 12:25 AM (GMT 0)
Connie,

I don't have Hep B. I have Giant cell hepatitis of cryptogenic origin. They think I developed it as a child. They consider it a mild form of hepatitis in my case since my enzymes were double at best. I was diagnosed via biopsy with some cirrhosis in 1990, developed edema in 2004,HE in 2008, TIPS in 2011, Ruptured spleen in 2013.

I don!t know if my lesion grew slowly because of my type of hepatitis. Interesting?

smilewinkgrin
Posted 7/20/2013 12:31 AM (GMT 0)
@ hep93...I wasn't aware that HCC reacts/grows at a different rate depending on whether you have Hepatitis B or hepatitis C. Is it true? I would to know.

@ Susie...do you have Hep B or Hep C? My mom has Hepatitis B. I haven't met many people on this forum with Hep B.
Posted 7/20/2013 1:50 AM (GMT 0)
Sorry, Susie. My memory is shot. Thanks for correcting me. SOMEONE on here has hep B. Speak up, whoever you are.

INSERT: Oh, yes, WD, it's your mom with hep B. I think there is someone else on here, also.

WD, I don't know if HCC grows at different rates according to the type of viral hep or AIH. Something to research, but I'm too tired tonight.

Hugs,
Connie
Posted 7/20/2013 3:17 AM (GMT 0)
@ retired....hello! Way to go on getting the smoking clearance. You can do this. Tell the sis after her vacation. She is going to be part of your support team, and trust me....she needs a good vacation now. We lost all fear of the HCC when reading this forum. It seems just another glitch, but one that gets you to the top of the list when the tumor reaches the size they need for "bonus points". Of course, this is when you really will WANT to smoke more than ever...sorry, sir. Chin up. Try chewing gum when you get the urge....and suckers with sticks...popsicles....chewing a straw. Hand/mouth type things like that may help. And deep breaths, which sounds weird, but do a few. And post about it here. We will cheer you on ;)


Those kids are precious and love you. They need you as an example of someone who fought for his life, and fought to see them grow. Hang in there. hugs, themiz
Posted 7/20/2013 3:41 AM (GMT 0)
Retired, I suppose you can't use nicotine patches, as that would show up as nicotine in blood work. That's how I quit 10+ yrs. ago...with patches. Also, avoid activities that you associate with smoking, such as drinking coffee or while on the phone. There was a time when I had to cut my phone conversations really short.

I used Tootsie Pops as my substitute for cigarettes.

Hugs,
Connie
Posted 7/20/2013 4:26 AM (GMT 0)
@ themiz...I fear that the HCC will spread. It's always at the back of my mind. My mom has HCC...she was diagnosed last June.

@ retired...so many good suggestions regarding what to do to help quit smoking. You can do it!!!
Posted 7/20/2013 6:07 PM (GMT 0)
WD, your mom's HCC seems to be growing little, if at all. Perhaps that is connected to hep B, since the hep B virus is easier to treat than HCV. Her tumor would likely grow much larger (even taking up the entire lobe) or develop into multiple large tumors, before it would be likely to spread. But I understand your concern...it was always mine, as well, especially the first time when my tumor was 12 cm x 11.5 cm and had invaded the inferior vena cava. I did lose the rt. lobe, but lived on the smaller left lobe for 4 yrs. before developing another HCC, much smaller, but still requiring a transplant.

Hugs,
Connie
Posted 7/21/2013 7:12 AM (GMT 0)
Thanks everybody, for the great advice about quitting ssmoking, all I need to do is keep reading all your postings. Now to answer all your questions at 2:30am because it's one of those nights that I can't seem to go to sleep, which seems to happen every third or fourth night. I am currently going to Peidmont Hospital in Atlanta, about 2 miles from Emory Hospital. My last drink was 1 January 2012, since then I had 6 months of Alcohol abuse counseling. My doctors are hepatologists, at both Peidmont Hospital, and St Francis hospital in Columbus, GA. My evaluations lasted for 2 days in Atlanta. The cost was a little over $31,000, so I don't think my insurance will pay the cost to get listed at another hospital. (Tricare Prime). I have been dealing with this hcv. type 3a and decompensated cirrhosis of the liver since December 2011. I hope there is a light at the end of this road. Thank you all for the great advice and may GOD BLESS EACH AND EVERYONE OF YOU AND YOUR FAMILY.

Post Edited By Moderator (hep93) : 7/21/2013 12:52:26 PM (GMT-6)

Posted 7/21/2013 6:56 PM (GMT 0)
Retired, is there a reason you didn't go to Emory instead of Piedmont? Was it insurance? When I went to Mayo FL, I was told by the financial person that they would accept whatever Medicare paid for the evaluation as full payment. This was a huge relief. Medicare also paid most of my transplant costs and most of the bills for continuity of care and other surgeries/scans/consults, etc. I notice on the statements that they have a contractual arrangement with Medicare, so I'm actually responsible for very little. I've had well over a million in charges since 2006, but my current personal responsibility is only $214. I send them $5 a month and they seem okay with that and never hassle me.

Hugs,
Connie
Posted 7/28/2013 6:50 AM (GMT 0)
Hep93

At the beginning I had no knowledge about any of this stuff. In November 2011 My wife and her sister wanted me to go to the Ft Benning hospital to have my VA disability increased. But when I walked in his office, he first looked at me and pushed on the right side of my stomach and asked me if that hurt. I told him yes, and he sent me to get a blood test and MRI and gave me another appointment.

By the time I was referred to a transplant hospital, I had no Idea that Emory Hospital was about 3 miles away from Piedmont hospital. But My transplant/hepatologist doctor knows what he is doing, and I am satisfied with him.

Now my wife has been taking care of me all this time, and she did something to her lower back and had to have surgery on it Tuesday. The Dr said that they had to fuse the two lower disk together. So for the next 4 to 6 weeks I'll be taking care of her. Already I had to reschedule some of my appointments because I can't drive that far. So my next appointment is on the 28th of August, if my wife's doctor gives her the okay to drive to Atlanta.

Post Edited By Moderator (hep93) : 7/28/2013 1:46:13 PM (GMT-6)

Posted 7/28/2013 7:57 PM (GMT 0)
Retired, I am really sorry about your wife's back problems. I feel sure that they fused the vertebrae, not the disks. They may have removed or partially removed the disks. Her recovery will be slow, but maybe she can drive in 5 weeks. Is your sister back from vacation? If you haven't told her what is going on, now is the time. You will need some help while your wife is recovering. Don't try to lift her...you risk hurting your own back. When she is discharged home, see if you can get in-home health care daily for awhile and also home PT. A doctor would have to order this.

While your tumor is small, you still need to keep an eye on it. While your wife will heal, you have a life-threatening illness.

Try to prioritize and focus on what's most important. Try to let all this stuff distract you from smoking, not cause you to smoke more!

Hugs and best wishes,
Connie
Posted 8/11/2013 3:04 AM (GMT 0)
in reading some of the posts to retired i saw some things that i am now very confused about.
my hep doctors r eager 4 me 2 have an rfa. i have 3 tumors. they have come right out and said they can only ablate 2 of them, the 3rd being too small, or hard to reach, or something. so will this NOT allow me to get on the list? why would they do that? if i am understanding it correctly, it upsets me. i feel it is "sneaky" or something.
let me know what i am missing or am unclear about.
thanks u guys,
with appreciation,
zoarie
Posted 8/11/2013 3:16 AM (GMT 0)
 Zo, Connie can best answer that question as she's been there with Cancer. I believe that ones MELD score increases when Cancer is present and that actually works to your benefit.

 Ziff 

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