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Any hepatocellular liver cancer survivors out there?

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

My dad was recently diagnosed with HCC in march 2010. He underwent a liver resection with good margins. I just want to hear from people who are going through the same thing? Does anyone survive this gloomy diagnosis?

kohsin
Posts: 27
Joined: Apr 2010

One 9 cm removed back in Feb 2010. So far so good, all numbers normal and stable.. Be positive, we all will beat this thing..

Also, I read your other post and realized that your Father's treatment process is almost same as mine, except I had 2 treatments of Y-90, one on its own and the 2nd combined with the portal emb. prior to the surgery. I am also cancer free and I have no chocie but to be positive on this.. As time goes by, I believe if you set your mind to believe, it will come ture..

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

Im trying so hard but my dad looks so depressed, he has lost almost 30 lbs in the last two months since he was diagnosed, he looks sick and i think its because he is worrying. His appetite has decreased since surgery, he had some complications with fluid build up and had to have a drain placed as well as a stent placed in his bile duct. He was sischarged home with the drain and I dont think that is good for his spirits, When were you diagnosed? It is priamry HCC? I just havent heard one good thing about this cancer besides "Its very agressive" im so sick of hearing that! Has your cancer spread anywhere? What were your followup plans after surgery?

kohsin
Posts: 27
Joined: Apr 2010

Mine WAS primary and was found i Oct 2009, no spread and that's great news. The surgery was done Feb 2010. Forget about the statistic, everyone is different, I don't think there are enough sample size to reflect the accurate stats anyway. Your dad's condition must be good enough for the surgery or the docs will reject that idea. The pain and suffering come with the territory. I was thinking I can be back on my feet in 2 months which I did but it took a lot of pain medication. I am still on the pain killer but down to 2 per day. I have ups and downs, and was told this will take at least 6 months to be back to normal and the scar tissue will still bother me. My onco says no chemo needed at this point, just blood and CT every 3 months for the first 2 years. I lost 25 lbs and I am watching my diet. LIVE EVERYDAY TO THE FULLEST!! Don't worry, he will come around. If he needs some support or someone to talk to, let me know if I can help

nickb1957
Posts: 3
Joined: Jul 2010

I had liver resection last may and the tumor spread to back i april thru portal vein. i got back pain, thought i pulled a muscle and went to chiropractor....what a fool.. i will tell you to put it in a nutshell if you ever experience anything unusual...run to you specialist and seek proper treatment ..i had a full blown back spine surgery to repair.i am just finishing rad and have 1st chemo appt next week...will fill you all in.nick........push you dad a long and pray hard

myfamily
Posts: 2
Joined: Aug 2010

Can you possibly help with the questions below?

I have been diagnosed with advanced HCC and metastatic spread to my lungs, preventing resection and radiation and chemo. However I am on Nexavar and anti-inflamatories; both of which seem to be helping.

My interest is to hear from someone that has or is surviving from their real own experiences (rather than a book perspective or what to do).

Koshin, you seem to have this experience to share, and it would be appreciated.

What kinds of food would you suggest that are supportive for persons with advanced liver cancer?

Regarding diets, is a macrobiotic style advisable, or too limiting?

Can you offer suggestions or information on how you should manage your health? (ie exercise type/duration, sleeping, meditation, etc.)

Can you offer suggestions on how would you manage daily life; as I feel overwhelmed?

Can you offer or make suggestions on how you managed time with your family, young children (I have a 3 & 5 year olds), holidays, etc.?

kohsin
Posts: 27
Joined: Apr 2010

Stay strong and be positive...
AS for your questions,
What kinds of food would you suggest that are supportive for persons with advanced liver cancer?
My personal experience is to have as much fruitS as as possible, low fat diet, no pork/beef, only chiecken.. All kinds of berries, grapes, and kiwi.. They make me feel energized/soothing.
Regarding diets, is a macrobiotic style advisable, or too limiting?
No clue on this one
Can you offer suggestions or information on how you should manage your health? (ie exercise type/duration, sleeping, meditation, etc
I am running 3 to 5 miles two days out of a week. Upper body strength daily for about 10 minutes. I had surgery so the activity is still limited but I believe you can exercise at your regular level.
Can you offer suggestions on how would you manage daily life; as I feel overwhelmed?
Keep yourself busy>> PLan for the worst and hope for the best. It will take a while to sink in. And only time will tell. There is no magical way on this..
AS for your last question, the kids don't need to know everything yet, but you should reach out to family and friends for support. You will have ups and downs (mostly when you are alone). Don't know if you are working, try not to quit or take a break if you can handle the job. ALSO, GET A SECOND OPINION ON YOUR CONDITION
LET ME KNOW IF YOU WANT TO TALK.

stage4liver
Posts: 46
Joined: Apr 2010

Hi,

I have stage 4 HCC with mets to lungs and adrenal gland. First off i would ask if you've had a second opinion, not so much on the disease itself but your treatment options? I've had a surgery and a TACEdb procedure done so far. Conventional Chemo isn't usually offered for liver cancer as it isn't very effective. I don't have cirrhosis or hepa and had good liver function so if you have either of those that might be why they aren't offering more options.

A macrobiotic diet is Inline with what you should be looking at. Removing animal protiens and replacing with more plant proteins. Low sugar, low salt, minimal to no red meats and heavy on fruits and veggies.

I still work full time and travel every other week for my job. It's up to you and your situation on if you feel you can or want to continue to work.

As for the kids your's are real young, mine is 10 and she knows what's going on with me and that I could die from it. We had a few conversations and she asks questions every now an then but other than that it's life as usual for the most part.

Dealing with the dx is different for everyone. When first dx'd the cancer consumed every inch of me mentally and physically. I decided to say f@•* cancer and take my life back as much as possible!! I guess I figured if this disease takes me, it isn't going to take everything from until that final day. I make the most out of everything I can.

I know you said you didn't want the book thing but I started reading "anticancer" written by a Dr. That found his own brain cancer by accident. He goes into diet, lifestyle, breakingthe news, etc. It's a good read.

Almost forgot I was also recommended to take maitake mushroom extract from the nutritionist at MSK where I go for treatment and they are the #2 cancer hospital in the US behind MD.

God Bless you and your family in this fight!!

tonyaskate's picture
tonyaskate
Posts: 3
Joined: Oct 2010

Hi
My situation is pretty similar to you. I had a tumor growing on my liver when I was pregnant with my son. I had a biopsys when I was 25 wks pregnant and the path report was benign. I had the baby and 8 mos late had surgery to remove the 17cm tumor. Next day in hospital I get the path report that the tumor has transformed to malignant and I am diagnosed w hcc with no history of hepatitis or cirrhosis. I did chemo for 7 mos and just had my first scan since chemo, my oncologist tells me it has mets to lungs and immediately referred to MD Anderson or Mary Crowley Research center here is Dallas.
I trying to decide now what to do, I know MD reputation however, my oncologist referred me so fast, he didn't offer any treatment to me. I was wondering have you done any clinical trial or what type of treatments are you going

jim2204
Posts: 13
Joined: Oct 2009

I had primary HCC and a resection on 12/07 to remove a 7.6cm tumor, had CT done on 2/10 and it look great, then just found out on last CT that cancer came back on resection site with 4.6cm mass. Now doctors want to remove right lube completely. I am scare it may come even after 2nd surgery. This is a terrible illness and very aggressive. Stay positive and trust in God. I will decide between surgery and TACE within the next few days.

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

Thanks for the replies it really helps no know we are not alone in this :) Jim thats pretty amazing you went three years being cancer free! How much was resected the first time, have they said if your liver has grown since the resection? My dad had a complete right lobe resection already I hope his liver grow back fast! I dont understand why this happens to people like him and you, it is a very scary thing, life changes so fast! Good luck on your decision, at least the mass is small. How often do you go for ct? are they full body ones or just if the liver?

jim2204
Posts: 13
Joined: Oct 2009

Sorry Sarah, it was typo, I had resection surgery on 12/09, not 12/07 and the tumor was 7.6cm. My CT on 2/10 was all clear and then a 4.6cm tumor showed up on the resection site on 5/10. my doctor says that the liver will grow back with a few weeks. I don't know whether mine grew back. I have to do CT every 3 months but as you can see, within 3 months, my tumor grew to 4.6cm already but i don't think insurance will pay for more frequent CT.

stage4liver
Posts: 46
Joined: Apr 2010

Diagnosed March 2010 stage 4 HCC. I had a resection of a 13.5cm tumor on the left side without good margins. I switched hospitals as there were more on the right side that couldnt be resected (about 7-8 largest being 5.125cm). Tried a TACEdeb procedure but had to stop due to a complication, went at it again 3 weeks later and was a success. Just got back from 2 week follow up and scans still no tumors in my liver. I have some in other places but none in my liver anymore and hopefully they dont come back!! Will be treating the lung and adrenal gland ones differently in the next couple months after my liver heals from this procedure. I know its only been 4 months but i'm staying positive, active and still working full time. I've only burnt 2 weeks of vaca for everything I've had done all with pretty speedy recovery thankfully. I've found the fastest way to recovery is get off the pain pills as soon and fast as possible and get yourself moving.

God bless anyone that has to deal with this disease!!

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

Mike thats awesome news! Lets put an end to ths terrible disease..Im trying like hell to keep my dad's spirits up even though I want to cry all the time, I still feel like im in shcok somrimes...

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

I was just wondering what your pathology report showed after your resection. My dad had his first onc appointment, so far so good. He is gaining weight and feels great. We will go for our first set of scans end of august, all we can do is pray I guess :)

kohsin
Posts: 27
Joined: Apr 2010

My report showed no visible invasions with good margin(4/4.5 CM). My last CT showed postop scars on the liver and the rest looked normal, AFP is down to 1.8 from 10,000 before surgery (it is a positive trend over last 3 months). So far so good.. I am praying for all of us and always remind myself to be positive. Sounds like your father has passed the most difficult phase and its on his way to recover..Great news if so>>

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

My dad is going for his first set of scans thursday bone scan, abdominal ct and mri as well as a chest ct and labs, we are very nervous...I guess that feeling will never go away, he isin great spirits, hope we get good news. Stage 4, Koshin, and Jim how are all of you doing?

kohsin
Posts: 27
Joined: Apr 2010

I just had my full blood panel and CT back.. Normal and stable.. Tumor mark is at 1.4.. The doc said the trend is awesome, from 10,000 B4 surgery, 500, 128, 75, 8, 1.8 and now the 1.4. I am loving it.. The post op CT showed a shadow 3 months ago is now gone.. I am confident and I am sure your Dad will be fine..

kohsin
Posts: 27
Joined: Apr 2010

I just had my full blood panel and CT back.. Normal and stable.. Tumor mark is at 1.4.. The doc said the trend is awesome, from 10,000 B4 surgery, 500, 128, 75, 8, 1.8 and now the 1.4. I am loving it.. The post op CT showed a shadow 3 months ago is now gone.. I am confident and I am sure your Dad will be fine..

stage4liver3
Posts: 3
Joined: Oct 2010

Hi Koshin! Your profile is very similar to mine, and I wonder if you would share the name of your doctor and hospital with me. Mine has prescribed Sorafenib and I have undergone general radiation, but they are reluctant to offer any other treatment due to the size of the tumor. I'm not ready to give up!!

kohsin
Posts: 27
Joined: Apr 2010

AS long as the cancer does not spread to Lung, bone, or lymphs. Mine was a single mass no mets. Did the SIRT twice and Embolozation to shrink the tumor. The hospital is UIC medical center here in Chicago and the Radiologist is Dr. Bui and the Surgen is Dr. Jeung. He came from Korea and HCC is his specialty back in Korea. He has tons of experiences. Hope this helps and good luck..

stage4liver3
Posts: 3
Joined: Oct 2010

Hi stage4liver. I chose my screen name having read your posts because our profile seems so similar, except that I am likely much older. My tumor is 11 cm now, and the doctors considered it to be unresectable or treatable because of the size. I am very surprised to hear that they operated on yours, and desperately want to consult with another doctor about this. Would you please share the name of your doctor and hospital with me?

I can't give up now! I know this cancer can be beaten, and I need more time with my family!!

tonyaskate's picture
tonyaskate
Posts: 3
Joined: Oct 2010

Hi

My tumor was 17cm when i had it removed, it was hanging on the right lobe of my liver. The surgery was much needed because the tumor was making me sick to my stomach. I live in Dallas and my surgeon had no problem removing the tumor.

crossedfingers
Posts: 5
Joined: Nov 2010

my dad was also diagnosed with HCC. At first, his tumor was only 13 cm but they refused to operate it. It also located on his right lobe. Now, its 16 cm already, Im just wonderin, what hospital where you underwent your operation?

Im hoping for your fast recovery.

crossedfingers
Posts: 5
Joined: Nov 2010

my dad was also diagnosed with HCC. At first, his tumor was only 13 cm but they refused to operate it. It was also located on his right lobe. Now, its 16 cm already, Im just wonderin, what hospital where you underwent your operation?

Im hoping for your fast recovery.

crossedfingers
Posts: 5
Joined: Nov 2010

my dad was also diagnosed with HCC. At first, his tumor was only 13 cm but they refused to operate it. It was also located on his right lobe. Now, its 16 cm already, Im just wonderin, what hospital where you underwent your operation?

Im hoping for your fast recovery.

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

How old is your father and what is his general health like? Any other problems? Surgeons take that into consideration regarding an operation.

crossedfingers
Posts: 5
Joined: Nov 2010

he is 63 and is in good condition. not bedridden and as what the dr. said he is strong for having such a disease. The problem is, it has been said this past week that the meds are not working anymore. When we knew about his cancer, we had a second opinion and they said the same thing.

laureliete
Posts: 1
Joined: Jun 2011

Dear Sarah Just wanted to tell you about Essiac, in case you don't know about it. It is a super immune builder that has been around for a long long time. It is mostly known for "getting rid" of cancer but has many other uses. My Dad after surgery then chemo was told chemo wasn't working. He was given three months and told to contact hospice - which my Mom refused to do - My Dad started taking E-Tea (that's the brand name he took - there are a few different kinds). He originally had kidney cancer and then it made its way to his liver. He no longer has cancer anywhere. Doctors cannot believe it. It has been almost 3 years. Needless to say we are thrilled. E-tea has worked for any type of cancer. I'm writing to you though because of the liver cancer. My dad started off taking 3 capsules twice a day. No food 3 hours before or 3 hours after. He set the alarm for 7 am took the pills went to sleep and then had breakfast at 10 am. He took the second set of three pills before he went to bed. He had MRI's every three months. The first MRI was WORSE it was so scary! The next one 3 mos later there was NO CHANGE (this is what we were waiting for) The next one cancer was smaller and then the next one smaller and then finally the cancer was gone. My Mom's friend did this same treatment 18 years ago. She had melonoma it went away and 5 years later got liver cancer and chemo wasn't helping her. She took E-Tea. My Dad took it exactly like she did. There are many many e-tea survivor stories. One man I know of had a liver damaged so bad from drinking the man was given no chance of survival. My Mom told his sister about my Dad and E-Tea. She started her brother on it and it is now 6 mos later and he is completely better. Doctors are baffled. We aren't!!! The main reason I am telling you this is because people who have had cancer seem to get it again. My Dad is on a maintenance does of E-Tea to prevent a recurrence. This is standard practice. He takes one pill twice a day. You can get it at some health food stores but it is around 30 dollars a bottle. You can order if from the manufacturer for under 20.00 a bottle and only 5 dollars for shipping no matter how many bottles are ordered. If someone has a hard time (nausea) taking 3 pills to begin with they should start with 1 in am and 1 in pm after a couple of days go to 2 then 3 twice a day. I haven't seen a recent post and was wondering how your dad is doing. I hope all is well.

Cjka
Posts: 9
Joined: Jun 2011

Thanks for the info. regardong e-tea. Is your dad using any other complementary treatments? Does he experience any side effects from it and is it ok to mix with prescription meds? It is so hard to think that treatment options are limited; this provides some hope! Does anyone know how or why it works? Thanks for your hope-inspiring post!

Betta
Posts: 9
Joined: Nov 2011

jo

cek-houston
Posts: 2
Joined: Oct 2010

I had a liver resection of over 11.6 cm in Houston at Methodist Hospital and teh man that performed the operation is Dr. John Goss. It's worth shooting your labs and CD's of tests run over to him. He resected 72% of my liver and I went through an RFA procedure about 3 months later and as of this past Thursday am cancer free. My resection took place in June of 2009 so it has been one year and four months since that time. If I can give anymore information or help in any way please let me know.

Best to you!

M

1962girl
Posts: 2
Joined: Jun 2011

Hi. Doctors found a golf ball sized tumor on my liver when I was 40. The statistics on liver cancer are pretty grim so I was terrified. But after the resection, the cancer never returned!! Don't listen to statistics. We are all different. And we are not just a statistic.

slg
Posts: 200
Joined: Jan 2010

I agree 100%. Oct. 2009 Doctors said my husband was not eligible for a liver transplant and now we are 4 days away from his follow up CT scan post Y-90 which will put him back in criteria for transpant.!!
Many people have given us inspiration on this website and others and we hope to do the same for others.

slg
Posts: 200
Joined: Jan 2010

I agree 100%. Oct. 2009 Doctors said my husband was not eligible for a liver transplant and now we are 4 days away from his follow up CT scan post Y-90 which will put him back in criteria for transpant.!!
Many people have given us inspiration on this website and others and we hope to do the same for others.

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