Surgery for stage 4 intrahepatic CC
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You are NOT rambling as the more you tell us the more we can help you on this terrible journey. You are also not going through anything the other Caretakers have not been through which means you are totally normal. When the initial diagnosis hits it is like being hit with a baseball bat in the pit of your stomach. But, I promise you that as soon as treatment begins and there is a game plan in place the fright turns to fight. I would have called the GI too! My stress reliever was to get in the car, put Mama Mia in the CD player and sing until they could hear me in the next County. That is also where I would do my crying and then I was OK again. As an advocate you are doing great, hang in, be strong!
You are absolutely right about the stress issue; believe me, that is something I work on everyday. I know stress can actually trigger illness, and yep–it’s very easy to ignore.
When my dad was first diagnosed my anger was off the charts; I couldn’t understand how a man who saw his doctors regularly was diagnosed so late (and only because I literally dragged him to the ER and said we’re not leaving until we figure out why he’s having all this abdominal pain)–I think I called his GI doc the next day to rant about how she managed to let 6 weeks go by without telling my dad about his MRI results (which actually showed the CC in August). It took me about a week to get it together and focus on what we needed to do to move forward.
The surgeon who did his laparoscopy to confirm the diagnosis actually took pictures of the metastases; all I could think was how can those little blister-looking things be causing all this? What we’re hoping for is that the chemo will get rid of enough of the mets so the surgeon can go in and resect the primary tumor and debulk as little as possible.
Thank you for letting me ramble—it’s great to have a place where others know exactly what you’re talking about!
Eli, you bring up a very valid point here, one that I cannot remember being discussed before! When Teddy and I started this journey, my GP was very concerned about me as he said women are affected by stress in different ways then men (not that men don’t stress) and I began going to a cardiologist just to keep watch! I am OK on that score now but am so glad he was concerned about me. I know, I know, easier said then done but stress can do so many things especially when you don’t relieve it, believe me I now know! Good point, good suggestions, thanks.
Welcome to the site. I certainly understand your anger and frustration. I experienced the same emotions at many points through my wife’s CC journey (she got ill in April 2011).
If I can give you one piece of advice, it would be this:
Try your best to manage your stress and frustration. Relaxation techniques, yoga, long walks in the park, whatever works for you. Your father needs you in the best possible shape. Daily stress can be very harmful. We all know it but tend not to take it seriously. Just so you understand where I’m coming from, I will mention this. I had a cardiogram in May 2011, one month after my wife got sick. It was perfectly normal. I had another one in November. It showed some abnormalities in the heart. Not something one would expect at age of 44. Looking back, I did a very poor job of keeping my daily stress and frustration under control. Hopefully you don’t fall in the same trap.
My best wishes to you and your father,
EliThank you for allowing me to vent, and for your understanding my frustration.
We met with the surgeon in Pittsburgh in January–he basically said that since the chemo is still working (my dad’s tolerating it well, he’s eating, maintained his weight–only downside is the fatigue), he didn’t want to interrupt/stop the treatment. He recommended at least a few more months of chemo and would re-evaluate around March. At that point he would do a laparoscopy to determine the extent of disease and then decide if he can proceed with surgery. So, for right now it’s more chemo.
He should have another CAT scan soon; I will post again with results.
Dear TSchildren7, welcome to our amazing family! I am so sorry about your Father
and while I won’t make excuses for Doctors sometimes CC is very difficult to diagnose. This is why we so often recommend 2nd and 3rd opinions. It is a waste of good energy and time to go back and try to figure it all out so the best you can do is go forward from here. I am so glad that he has tolerated the chemo so well. No growth to the primary tumor is a lot better than growth but I understand your frustration at no mention of the METS. No need to apologize for anger on this site we all understand. What would we do without squeaky wheels? You are the ones that make the best advocates. I would certainly push for that other opinion by squeaking loud and clear. We always like to tell newbies to read as much as they can as knowledge is the most powerful tool in dealing with CC. We also tell new patients to make sure to ask the Doctors if they have the experience to treat CC. Please update us on your Dad and your progress. Like Margaret says, put on your boxing gloves and let the fight begin.Hello everyone–
I’ve been reading and following many discussions on this website, but didn’t have the energy/strength to start posting. I apologize for taking and not giving.
My father (Edward-age 72) was diagnosed 9/19/11 with stage 4 intrahepatic CC with mets to the small colon and omentum (I have to add after a prior abdominal CT, MRI, endoscopy, colonoscopy and being treated with prilosec for reflux–it’s horrifying to think that his abdominal pain/weight loss during the 4 months prior could be so misdiagnosed. But that’s another story). He has had 6 rounds of chemo (gemzar/cisplatin) over the last 4 months and has tolerated it all remarkably well. After Christmas, his CT showed no change to the primary tumor (in the bile duct); but the mets were not mentioned at all in the report (Dr. couldn’t say whether that meant they were gone, shrunk..I thought that was pretty important to know).
I apologize for my anger and sarcasm… I can’t blame the docs for the cancer, but I can blame them for a missing stage 4 cancer that was evident on an earlier MRI; for smiling and acting as if they are willing to answer questions but then hurrying us out the door; for not providing pertinent information like the fact that the University of Pittsburgh has a liver cancer center (we live near Allentown, Pa–would have been nice to know earlier)…I could go on, but I won’t. My parents are the type of people who trust whatever their doctors say without question; I’m the squeaky wheel that keeps asking questions and wanting a second opinion–this has made the journey even tougher.
My father does not go on the internet and doesn’t really know his prognosis; I’ve actually started to think that has put him in a good place–he believes he can beat this, so who’s to say that won’t happen? I guess what I wanted to share the most with everyone is this–Research as much as possible! Your local docs may not have any experience at all with this rare cancer. I found out that UP is one of only a few places in the country that will do the kind of surgery my father needs (liver resection with cytoreduction/debulking); no one in the Lehigh Valley told me that.
I want to save my dad’s life if I can; at the very least, know that we tried everything possible, and to give him more time with us. My thanks to all the courageous and thoughtful people who have shared their experiences and knowledge–you’ve helped more than you can know.
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