Aa
need some encouragement
I am a 2 time non-responder, recently after stopping triple therapy I had a untra sound, which revealed a lesion, a MRI has confirmed a 2 cm tumor which is cancerous, I have also progressed to early stage cirrhosis. My Drs are meeting on Feb 27 to discuss strategy. Has anyone been through this? What can I hope for?
I'm sorry to read this thread--only Hector and maybe a few others understand how you feel right now. I would like to wish you inner strength--there is a saying "God only gives to one as much challenges as one can bare". It appears that you have an access to a great hospital and will be under care of good doctors.
To Hector: I wish you the best with TACE procedure--I truly hope that it will work out greatly. Also I wanted to thank you for your great presence and continuous support of people on this forum. Your posts always bring somewhat different perspective to many things.
To Hector: I wish you the best with TACE procedure--I truly hope that it will work out greatly. Also I wanted to thank you for your great presence and continuous support of people on this forum. Your posts always bring somewhat different perspective to many things.
My thoughts and prayers are with you Hector Im weeping and glad to know there are people out there like you. I send all my best
Larry
Larry
hey pooh thank you so much I didn't see a message but I do want you to know I'm grateful.
Larry
Larry
Listen to Hector he will go above and beyond to help you! You are in good hands (sounds like an All State commercial)....sorry trying to lighten this up a little bit.
Hector....update us when you can!
((((Jules))))))
Hector....update us when you can!
((((Jules))))))
It will be okay. We are all scared. Scared out of our minds sometimes. This is the toughest thing most of us have ever dealt with. Believe me, I have my "meltdowns" every now and then. It is normal. I'll start crying on a bus, in a restaurant, having a scan. Most people are kind and try to help. Getting a diagnosis for a very deadly cancer is something that people only think about in nightmares. But there are treatments now that work so we are very lucky.
It does get better. Trust me. You are probably still in shock. We all must go through the phases cause we are human. It is a roller coaster for sure but for ever down there will be a up time. It is amazing how we humans can adjust to anything. Just do what you have to do. If you feel like crying then cry. Don't hold it in as some type of macho thing. It will only make it worse. Soon you will appreciate every day of life so much more. Enjoy yourself when you can. You will find even the bad days are good days because you are alive. I have never been happier in my life generally although I do have my bad days. Remember every minute is precious. When we get our transplants we will have a shot at our second lives.
Anyway...I am waiting right now to go into the OR and have my TACE treatment. I'll try to write later.
Hang in there. There is always hope. Search inside yourself and you will find that you are stronger than you ever knew.
If I can do it so can you.
Hector
It does get better. Trust me. You are probably still in shock. We all must go through the phases cause we are human. It is a roller coaster for sure but for ever down there will be a up time. It is amazing how we humans can adjust to anything. Just do what you have to do. If you feel like crying then cry. Don't hold it in as some type of macho thing. It will only make it worse. Soon you will appreciate every day of life so much more. Enjoy yourself when you can. You will find even the bad days are good days because you are alive. I have never been happier in my life generally although I do have my bad days. Remember every minute is precious. When we get our transplants we will have a shot at our second lives.
Anyway...I am waiting right now to go into the OR and have my TACE treatment. I'll try to write later.
Hang in there. There is always hope. Search inside yourself and you will find that you are stronger than you ever knew.
If I can do it so can you.
Hector
Thank you Hector! The time and effort you took to reach out to me is truly wonderful. My thoughts and prayers go to you, You've given me some hope on a dark day, and yes, I'm scared. Knowledge is light on the darkness of fear and anxiety, thank you for sharing. I will be getting back to you of course. I now have some questions to ask and some hope to hang on to. Bless you Hector
unclelar-
Here is a very good booklet that will give you a great overview as a layman about liver cancer. (HCC) Very comprehensive.
National Cancer Institute (NCI) booklet
"What You Need To Know About™ Liver Cancer"
http://www.cancer.gov/cancertopics/wyntk/liver/page1
-------------------------------------------------------------------------------------------------------
http://www.froedtert.com/SpecialtyAreas/LiverPancreasBileCancer/Liver-Cancer/Liver-Cancer.htm
"The liver cancer team at Froedtert & The Medical College of Wisconsin is a group of specialists who have extensive experience in treating patients with challenging liver malignancies. Because they focus on liver cancer, they understand the many nuances of the disease, including diagnosis, and are up-to-date on the most current and advanced treatment options.
Every patient in the program receives a multidisciplinary treatment plan. Our team includes surgical oncologists, medical oncologists, radiation oncologists, interventional radiologists, hepatologists, transplant surgeons, and specialized diagnostic radiologists and pathologists. These experts meet weekly to discuss patients and ensure every individual is receiving the most effective care.
Committed to clinical excellence, our team members provide the full range of standard and innovative therapies for liver cancer. Their dedication to research and education ensures patients benefit from the latest knowledge of liver cancer treatment.
Liver Cancer Types, Symptoms and Diagnosis
There are two broad categories of liver cancer — tumors that originate in the liver itself (primary liver cancer) and cancer that has spread to the liver from other parts of the body (secondary, or metastatic liver cancer). Learn more about these types of liver cancer, their symptoms and diagnosis.
Liver Cancer Treatment Options
Most patients with liver cancer require several different kinds of liver cancer treatment. The liver cancer team works together to make sure all patient care is fully coordinated.
Clinical Trials for Liver Cancer
The liver cancer team at Froedtert & The Medical College of Wisconsin is actively involved in national research programs offering patients access to new clinical treatment protocols.
Managing Liver Cancer Symptoms
Many patients with liver cancer may also have underlying liver disease, such as cirrhosis. Our liver cancer specialists include physicians in the Gastroenterology/Hepatology Program who specialize in managing liver disease. In addition, our nationally known Palliative Care Program provides support and services for patients with complex symptoms.
Liver Cancer Questions and Answers
A liver cancer diagnosis can be extremely overwhelming. To help you get through this difficult time, we've created liver cancer video answers to common questions you may have.
Liver Cancer Second Opinion Program
When you are diagnosed with any serious disease, it makes sense to get a second opinion. The Liver Cancer Second Opinion Program gives patients fast access to physicians who specialize in liver malignancies. Our liver cancer team will confirm your diagnosis, talk to you about your alternatives and make sure you are receiving the most effective care for your specific condition. "
-----------------------------------------------------------------------------------------------------
http://www.froedtert.com/SpecialtyAreas/Gastroenterology/
"Specialized Care Team
The Froedtert & The Medical College Gastroenterology/Hepatology Program is staffed by a nationally recognized group of physicians and scientists representing multiple specialties. Their unique collaboration provides a multi-faceted approach to patient care, research and education in the prevention, diagnosis and treatment of all forms of digestive disease, including:
General gastrointestinal (GI) disorders, such as abdominal pain, heartburn, diarrhea, constipation, gas, fecal incontinence, hemorrhoids, nausea, vomiting, motility disorders and gastrointestinal bleeding
Bowel disease, such as cancer, inflammatory bowel disease (Crohn’s disease and ulcerative colitis) and irritable bowel syndrome
****Liver disease, such as viral hepatitis, cirrhosis, liver cancer and liver transplantation evaluation and management****
Diseases of the pancreas, bile ducts and gallbladder, such as tumors, stones, cysts and strictures
Esophagus disease — gastroesophageal reflux disease (GERD), Barrett’s esophagus, cancer, achalasia, eosinophilic (allergic) esophagitis and diffuse esophageal spasm
Swallowing disorders (dysphagia) and gastroesophageal motility disorders
Stomach disease, such as dyspepsia, ulcers, cancer and cyclical vomiting syndrome
Nutritional disorders, including celiac disease
Women’s GI disorders
The gastroenterologists and hepatologists in the program provide care based on a multidisciplinary approach. This comprehensive team includes surgeons, radiologists, oncologists, interventional radiologists, radiation oncologists, pathologists and other specialists who are readily available — all under one roof. They are joined by physician assistants, nurses, dietitians, and other team members who have the knowledge, experience and skill to manage the entire range of complex diseases of the digestive tract."
Hector
Here is a very good booklet that will give you a great overview as a layman about liver cancer. (HCC) Very comprehensive.
National Cancer Institute (NCI) booklet
"What You Need To Know About™ Liver Cancer"
http://www.cancer.gov/cancertopics/wyntk/liver/page1
-------------------------------------------------------------------------------------------------------
http://www.froedtert.com/SpecialtyAreas/LiverPancreasBileCancer/Liver-Cancer/Liver-Cancer.htm
"The liver cancer team at Froedtert & The Medical College of Wisconsin is a group of specialists who have extensive experience in treating patients with challenging liver malignancies. Because they focus on liver cancer, they understand the many nuances of the disease, including diagnosis, and are up-to-date on the most current and advanced treatment options.
Every patient in the program receives a multidisciplinary treatment plan. Our team includes surgical oncologists, medical oncologists, radiation oncologists, interventional radiologists, hepatologists, transplant surgeons, and specialized diagnostic radiologists and pathologists. These experts meet weekly to discuss patients and ensure every individual is receiving the most effective care.
Committed to clinical excellence, our team members provide the full range of standard and innovative therapies for liver cancer. Their dedication to research and education ensures patients benefit from the latest knowledge of liver cancer treatment.
Liver Cancer Types, Symptoms and Diagnosis
There are two broad categories of liver cancer — tumors that originate in the liver itself (primary liver cancer) and cancer that has spread to the liver from other parts of the body (secondary, or metastatic liver cancer). Learn more about these types of liver cancer, their symptoms and diagnosis.
Liver Cancer Treatment Options
Most patients with liver cancer require several different kinds of liver cancer treatment. The liver cancer team works together to make sure all patient care is fully coordinated.
Clinical Trials for Liver Cancer
The liver cancer team at Froedtert & The Medical College of Wisconsin is actively involved in national research programs offering patients access to new clinical treatment protocols.
Managing Liver Cancer Symptoms
Many patients with liver cancer may also have underlying liver disease, such as cirrhosis. Our liver cancer specialists include physicians in the Gastroenterology/Hepatology Program who specialize in managing liver disease. In addition, our nationally known Palliative Care Program provides support and services for patients with complex symptoms.
Liver Cancer Questions and Answers
A liver cancer diagnosis can be extremely overwhelming. To help you get through this difficult time, we've created liver cancer video answers to common questions you may have.
Liver Cancer Second Opinion Program
When you are diagnosed with any serious disease, it makes sense to get a second opinion. The Liver Cancer Second Opinion Program gives patients fast access to physicians who specialize in liver malignancies. Our liver cancer team will confirm your diagnosis, talk to you about your alternatives and make sure you are receiving the most effective care for your specific condition. "
-----------------------------------------------------------------------------------------------------
http://www.froedtert.com/SpecialtyAreas/Gastroenterology/
"Specialized Care Team
The Froedtert & The Medical College Gastroenterology/Hepatology Program is staffed by a nationally recognized group of physicians and scientists representing multiple specialties. Their unique collaboration provides a multi-faceted approach to patient care, research and education in the prevention, diagnosis and treatment of all forms of digestive disease, including:
General gastrointestinal (GI) disorders, such as abdominal pain, heartburn, diarrhea, constipation, gas, fecal incontinence, hemorrhoids, nausea, vomiting, motility disorders and gastrointestinal bleeding
Bowel disease, such as cancer, inflammatory bowel disease (Crohn’s disease and ulcerative colitis) and irritable bowel syndrome
****Liver disease, such as viral hepatitis, cirrhosis, liver cancer and liver transplantation evaluation and management****
Diseases of the pancreas, bile ducts and gallbladder, such as tumors, stones, cysts and strictures
Esophagus disease — gastroesophageal reflux disease (GERD), Barrett’s esophagus, cancer, achalasia, eosinophilic (allergic) esophagitis and diffuse esophageal spasm
Swallowing disorders (dysphagia) and gastroesophageal motility disorders
Stomach disease, such as dyspepsia, ulcers, cancer and cyclical vomiting syndrome
Nutritional disorders, including celiac disease
Women’s GI disorders
The gastroenterologists and hepatologists in the program provide care based on a multidisciplinary approach. This comprehensive team includes surgeons, radiologists, oncologists, interventional radiologists, radiation oncologists, pathologists and other specialists who are readily available — all under one roof. They are joined by physician assistants, nurses, dietitians, and other team members who have the knowledge, experience and skill to manage the entire range of complex diseases of the digestive tract."
Hector
This thread took my breath away. I can almost feel destiny working for Unclelar; matching him up with Hector and those other souls holding up sign posts for each other. This was a beautiful thing and what makes this site stand out. The warriors with their hands extended to help and support other warriors is an exchange I needed to experience. My body (liver) may be broken but my soul is enriched. Amen
Good luck Hector with your Surgery - tried to leave u a note but it was blocked. Unclelar, we are here for you and acknowledge your fear and courage.
Good luck Hector with your Surgery - tried to leave u a note but it was blocked. Unclelar, we are here for you and acknowledge your fear and courage.
sorry about your news..... as someone already said Hector is the one that could help you navigate a course better than most
Sorry to hear of this development.
Hector is on the transplant list as UCSF. He's had one tumor removed and will be going in for chemo to remove another tomorrow.
Unless he shows up tonight, you may have to wait to connect with him.
Don't give up!
Although I had a transplant I never had cancer.
However, I belong to a couple of transplant forums and a number of the members there have been had cancerous tumors removed prior to transplant. Since the tumors are connected to having a cirrhotic liver, once you are transplanted the problem of the cancer is gone.
I'm not an expert.
Hector will have more accurate and thorough information for you.
Hang in there~
Hector is on the transplant list as UCSF. He's had one tumor removed and will be going in for chemo to remove another tomorrow.
Unless he shows up tonight, you may have to wait to connect with him.
Don't give up!
Although I had a transplant I never had cancer.
However, I belong to a couple of transplant forums and a number of the members there have been had cancerous tumors removed prior to transplant. Since the tumors are connected to having a cirrhotic liver, once you are transplanted the problem of the cancer is gone.
I'm not an expert.
Hector will have more accurate and thorough information for you.
Hang in there~
Tough news to take. I will add you to my prayers tonight. Please stay in touch and let us know what they say on the 27th. Thank you for sharing it.
Very sorry to hear about this development. I would highly recommend that you reach out to HectorSF. He is a wealth of information, and is very generous with his wisdom, love and support. He know just about everything there is to know about cirrhosis and liver cancer. As a matter of fact, I bet he'll find you. Sending you prayers and healing thoughts.
Thank you for your concern and reply it means a lot. I am being treated at the medical college froedert in Milwaukee. I feel confidant that they will try to help.
I realize attitude is so important, however, with this new news, I am reeling. So I do appreciate your comments and support very much.
I realize attitude is so important, however, with this new news, I am reeling. So I do appreciate your comments and support very much.
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Forgive the typos, by I just wanted to reply before I go into the hospital tomorrow morning...
I am sorry to hear about your diagnoses. Luckily a lot of progress has been made with liver cancer (HCC) so you should be okay, as they caught the tumor early. They will keep your cancer under control until you can get a transplant. Transplant is the only cure for cirrhosis and liver cancer at this point.
I am going into the hospital at 7 am tomorrow for treatment of my second liver tumor. I am have a TACE ( transarterial chemoembolization) with doxorubicin drug- eluting beads tomorrow. This is the most effect liver cancer treatment. So please private message me as I will in the hospital until Thursday. I will try to get back to you when I can. I will be all drugged up on morphine so I may forget this post.
I can tell you the whole process of what you need to do as I have been dealing with liver cancer since June.
I was also a non-responder to treatment. So I was listed at 2 transplant centers before I developed cancer which has speed up the time I will need a transplant.
Just a few quick points.
Psychologically liver cancer is a tough diagnosis. There is something about the "C" word that is different then anything else. I go to transplant support meetings and see a therapist and talk about my fears, worries, death and all the emotions this disease will makes you feel and think about.
I looked up medical college froedert in Milwaukee. That is where you need to be. So I am glad you got connected with them! Finding a transplant center is the first and most important step. Congratulations!
They will do a full evaluation of your liver disease and general health and get you on their transplant list. Very important!
They will need to do a CT scan with contrast or MRI with contrast to confirm that the lesion is HCC. So there is always a chance it is not liver cancer. Only with special contrast imaging can they confirm HCC. So waiting is something we all have to learn to do while on a transplant list.
See the AASLD guidelines I gave you the link for it will explain how HCC is diagnosed.
Get copies of all you reports, blood tests and scans from the hospital. Scan report are most important. Liver cancer is managed using scans more than anything else. I have all of my records and I can explain to you what they all mean. It takes awhile, but after time reading doctor reports will give you a lot of insight into exactly what is happening with you.
What is your AFP? This is very important to know. So always get copies of your blood tests.
Here is some of the good news:
Since you have early cirrhosis you will be able to have the best treatment options available to control your cancer. Meaning you are healthy enough to take advantage of the best treatments.
If it turns out this lesion is HCC you want it to be 2.0 cm or more in size. They will listed you for transplant and you will get cancer points so you can get a transplant without having to have server liver damage as most transplant patients must. You should be able to get a transplant this year I would guess. I will explain who the system works later. Although none of us wants a transplant, once you have a tumor more and more will develop so you want to have a transplant to cure your cancer.
As I said I will help you step by step through the entire process as I have been through all of the things that will be happening to you in the near future. I have had one cancer treatment in December which totally eliminated my first tumor, now I hope tomorrow will work as well on my second tumor.
The main thing that happened to me was the shock of having liver cancer. I was stunned for days and then did a lot of crying and thinking about death. This is all normal, although it feels crazy at the time.So it is important to find someone that you can talk to about your fears and anxieties. The medical center may have a transplant support group. Look on their website or call them and asked. Just talking to other who are waiting or who have had a transplant is invaluable. You will learn more than you can in any literature.
Here is the definitive doctor's guide to HCC. History, diagnosis, treatment etc.
http://www.aasld.org/practiceguidelines/Documents/HCCUpdate2010.pdf
You may not understand all the terminology right now but in time you will.
So hang in there. It is scary. But the odds are good that you will be fine. By being educated about your disease and condition you will be able to make the best choices of the options you have. Feel free to contact me anytime. Just realize I may be out of it for a while after my chemo.
Got to get 5 hours of sleep before chemo...
Hector