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Questions about my father's cancer

southstl04
Posts: 3
Joined: May 2013

This is the first time I've signed up for a forum of any kind, I just can't find good information online anywhere and hoping this might help.

August 2012, my father had a surgery to put a rubberband on bleeding blood vessels in his esophagus. He wouldn't really tell me why, so I started looking up info online and asked him if his doctors mentioned hep c or cirrosis. He confirmed that they had been diagnosed. In the last 3 months, he was given a diagnosis of primary liver cancer and just last week (late April 2013) a biopsy confirmed that it has spread to his lymph nodes and esophagus.

I've been really confused, as is he, because the physicians have not offered him a medication of any sort to start on. They apparently mentioned treatments, my father has apparently given the okay....but nothing has happened.

What the heck is going on??? Other times when I've had family with cancer, they start on treatments right away. Also...isn't this bad. Without treatment, he's just gonna die, right? Quickly, perhaps? He lives in about 5 states away, we don't know eachother very well, but he's agreed to allow me to attend appointments with him.

Any thoughts? Advise? Ideas of prognosis? Questions I should be asking?

 

XtremediverHCC
Posts: 57
Joined: Feb 2011

Hep-C will cause Cirrhosis which in turn will cause HCC  (I am assuming that HCC is the primary Liver cancer your father was actually diagnosed with).  There are other primary Liver cancers, as well. How long has it been since your Father gave the "OK" to proceed with treatments and do you even know for certain that he has?

Once cancer has spread into the Lymphnatic system it will proceed to affect numerous other organs within the body.  Brain, Lung, Bone, etc. are all likely places for it to spread to.  Do you know what the treatment is that he is supposed to be proceeding with?  Liver transplant is usually off the table of options once the cancer has spread to other areas. I know it is tough to not know so I would suggest that you be at those appointments and ask the hard questions of his doctors to get a better understanding of just what his treatment options are and exactly what his prognosis actually is. Keep in mind that unless you are legally listed as the Patient Advocate then most doctors will not give you much information.  I have  had Hep-C, Cirrhosis and HCC twice in the last 6-1/2 years and survived - it is not necessarily a death sentence anymore so ask the questions and get the answers that his doctors can best provide you with.  

southstl04
Posts: 3
Joined: May 2013

Thanks for replying, I was starting to worry that I wouldn't get a response and I was desparate for information. Since August, I've read what I could online about Hep C and Cirrhosis. If I hadn't, I don't think my father would have even mentioned this to me.

He does have primary liver cancer. The cancer was diagnosed about a month ago. He told me that they were going to start him on some meds to treat, but didn't know the names of the meds. Since then, I've called him regularly and have asked if the MDs have started him on anything and he said they hadn't and that they were supposed to be calling him back to let him know the next steps. Then he goes in for this biopsy and finds out that it has spread. He also told me that the tumor in his liver is the 'best' kind according to the docs. He said 'it's just one big one that can easily be cut out'. He also mentioned (a month ago) that they could possibly 'starve the tumor' in his liver by cutting off the blood or oxygen supply. But again, nothing has happened yet.

XtremediverHCC: I like that you shared your positive outcome. Did your cancer spread into other organs? Which one? Were the treatments difficult? Did you have to fight to get them to start treatments? I'm waiting for him to let me know when his next appointment is so I can attend. What questions should I be asking? What shoudl I know about the tumor? After reading your post, I called my father's sister and asked her to become involved and be a patient advocate. She's agreed and my father has already set that up. My father is in his mid 60's and still works 40-60 hours per week

XtremediverHCC
Posts: 57
Joined: Feb 2011

My cancer did not spread outside of the liver - as I said earlier it was HCC caused by Hep-C.  I first cleared the Hep-C virus through a 1-1/2 year ordeal of Interferon combo drugs injected weekly.  It was about 6 months after I cleared the Hep-C virus that the first two tumors were spotted on a ultrasound.  They were further confirmed through a MRI and subsequent biopsy.  I had a Liver resecection where a wedge of the liver was removed with clear margins surrounding the tumors.  The 2nd tumor recurred about 3 years later and was found by followup MRI which I was having every 3 months.  It was removed by RFA (radio frequency ablation). My healthcare provider is the University of Michigan hospital in Ann Arbor, MIchigan and all I had to do was agree to the treatments and they made them happen -FAST!

I am 62 years of age and I still get checked twice a year now for any possible recurrences.  The Cirrhosis will never get better, but it doesn't have to get worse, either. I have done a lot of research and educated myself on all of the latest techniques and procedures so that my doctors are aware of my knowledge and speak to me in a more precise manner with answers that the average patient probably do not get.  Be Proactive in his treatment and the doctors will respond likewise in their discussions of what they are doing or will be doing and when.  DO NOT PROCRASTINATE in gettting treatments done, they will only get worse if you do. Be insistent in getting the necessary answers.  If your father has only one large tumor then it is possible to remove it if the remaining liver is healthy enough.  Many times the cancer is found to late to have much remaining liver if they remove the malignacy itself.  Remember that the tumor and a clear margin of unaffected liver must be removed to consider it succesful. Ask them where it is, the actual size, can he have a liver resection, ablation or some other treatment to shrink or elimanate the turmor.  The fact that it has already metasisized to other areas of the body is not a good indicator.  Usually, they will only try to shrink the tumor through other techniques to help prolong his life. If it is in his lymphnodes and spread to the esphogus then the options are much more limited than mine was.  I hope this helps to relieve some of your questions and anxieties.  

southstl04
Posts: 3
Joined: May 2013

I found out additional information about the cancer. The primary turns out to not be in his liver like they previously thought. He has lung cancer, which has spread to his liver, lymph nodes, stomach and esaphogus. Luckily I was able to have my father sign a consent so that my aunt and I were able to contact his physicians. This was tough news to take. Thanks for your suggestions.

XtremediverHCC
Posts: 57
Joined: Feb 2011

I am so sorry to hear this news. From what all that I have learned over the years, they will treat the cancer in his liver, stomach and esaphogus with the same treatments that are used for his lungs.  It is, after all, lung cancer and not one of the others.  Others may know better, however.  I would suggest posting to the Lung Cancer category for assistance in understanding your options and the course of action that the doctors might suggest.  I wish you and him, the bery best of luck.

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