Looking g for question to ask

[Joceku4]

Hi!
So my dad had his colonoscopy today (recap - had ct scan, found mass, identified as colon cancer, is in liver and possibly in lungs too - dad has no symptoms). Problem is that I am trying to get my mom to go and read up on colon cancer and the colonoscopy so she knows what kind of questions to ask and can become familiar with the terminology And she just won't. She keeps saying that the doctors will tell her. It's getting me upset becuase I feel like someone needs to know what is going on. My dad will not do it either.
I was not there for my day's colonoscopy today but will be going to the surgery that he will be having next week. They are going to remove the cancerous part in colon and then he will meet someone about it in his liver and make the next steps for that. Chemo I am assuming. We have not gotten the results of the colonoscopy; expect them tomorrow.
My questions for you all are what is some of the terminology that I should know, what are they looking for in the results? I keep reading about the lymph nodes and getting a number of those positive against those tested, what size is normal to be taken out(don't even know what to call it) also we have not gotten a stage yet, ; although I am assuming IV since it has spread. What is involved in the surgery? What is recovery? How long until they move onto the next step to rid my day's body of this monster? Sorry for so many questions, but I just want to be informed instead of just hearing what is going on from my mother.

Thanks! Jocelyn

[SMR]

The beginning of this journey (along with many parts!) is indeed really scary. A great place to start would be the terminology thread at the top of this board. In one way, your mom is right- the doctors will tell you, but they are partners with us on this journey.
I suggest you bring a notebook and write down everything. This way you can go back and re-read and digest. Never be afraid to ask the doctors for clarification. I've emailed our docs several times after looking over my notes. Sometimes I will come here to the boards after a doctors visit and ask for opinions. Often times it gives me more questions to pose to the doctors. To be honest our docs have never minded all my questions. At least if they do, they don't show it!

Good luck, and keep stopping by here.

[Bev G]

Hi Jocelyn,

Here's another welcome to the Colon Club. Sucks that you need to be here. One thing you've probably already figured out: You can't force your parent to know what they don't want to. Like it or not, they are from a different generation, and one that often didn't have a strong desire to know what was up. Many folks of that certain age felt/feel like "I'll just let the doc know what to do and do it". I was mid-50s when diagnosed with stage IV cc and am so lucky to have the onc I do--she always took it from me, what I wanted to know, and as I learned more (mostly from here) I had more questions that weren't crazy, and she answered them, we have continued in that manner for the past 3 years. Now that my husband is very, very sick from stage IV lymphoma, we share docs, and the same thing continues vis a vis finding out what we need to know. (BTW, through the new experience with my husband's diagnosis a year ago, I've had the chance to really know how wonderful and amazing this board it...the lymphoma board is NOTHING like our's!!!) Anyway, I digress, as usual.

You might want to see if your Dad will authorize you to get information/read charts/ask questions on his behalf. If he doesn't give this consent (in writing) it will be harder for you to learn what you may want to. So, perhaps speak with him about YOUR "need to know" vs HIS (and your mom's) "need to know". The choice(s) will all ultimately be his to make. And, without his consent, because of HIPPA, his doc legally can't really talk to you about what is going on.

Assuming your dad agrees, you'll probably want to confirm how they know the issues in his liver are, in fact, metastatic disease from the colon cancer. There are things that can show up in the liver that aren't cancer. You'll also want to talk with the oncologist about how he/she thinks your dad may tolerate chemo with his other medical problems (especially the pre-existing cardiac disease) Does your dad want to really work on fighting this? That, of course, will be up to him, and to an extent, up to his docs. Age, in and of itself, is NOT a reason not to treat, but his age and his overall health, and his desires, should be factored into chemo decisions. Surgery makes sense, probably, to get the colon cancer out, but unless it is obstructing it is not an emergency. These cancers are usually really slow growing. I was told my tumor had been in my colon >10 years, and the one in my liver >4 years. Cancer spreads (usually) either through the lymphatic system, or the blood circulation. Don't panic if you dad has some positive (for cancer) lymph nodes, but he may not. If the cancer HAS spread to his liver, it could have gotten there via his blood. Liver resections to remove tumors are very tough surgeries. There are other potential avenues to get rid of liver mets, but many, many factors come in to play, and there is lots of time to figure this out.

Try to avoid Googling too much. It will do nothing but terrify you. I promise you this. My best advice: One slow step at a time---really, really slow steps and tons of patience.

Best wishes,

Bev

[Rob in PA]

Wow. Bev took the words outa my mouth! Get a BIG notebook and write everything down. My docs NEVER complained about our questions and I've never felt like I was being rushed out the door.

Rob

[mstults]

Seems like my Dr will tell me what it ask without hesitation but doesn't odder a lot unless questioned. Some people don't want to know. I have a cousin with metastatic breast cancer that sees the same Dr that I do. She wants a minimum amount of info and relies on the Dr to tell her what to do. I tend to want more info and I'm not hesitant to ask.

[Nick]

Bev's response was full of wisdom - definitely slow down, I'm into my second year and still looking things up. Usually the doc's are great at explaining - I say something like "I don't understand 'poorly differentiated' " and they'll cover it for you.
Please understand everyone's response is different, this may be your parents way of dealing with it, they get a doctor they trust and follow him. If that's what they want you should support them, don't 'make' them do anything.

And it's fine if you want more.....I was more like you - wanted to understand everything, to the point of getting scans and looking at them myself. Just realize they may not want to be there when you talk to the doctor in detail.

This is overwhelming to everyone at the beginning. You'll understand all the lingo soon enough. Everybody is stressed, everyone is scared - just go slow, don't read too much at one time (used to just get me upset) , and talk to people. Your friends, relatives, folks here on the boards.....

I think you're in the right spot (here on the Colon Club) to learn.
Good luck to you,
Nick