New to colon cancer: Don't know my stage yet. What should I ask?

Hello Jeff,
You sound very concerned regarding your condition; many of us who were diagnosed with colon cancer were in your same boat; it is all very overwhelming initially so just be patient and keep asking questions. When did you realize that you had colon cancer and what test were performed to determine these facts?
The connect site shares many options for individuals like yourself to seek out and feel more informed regarding your status so keep sharing and other members will also share their stories.
Please respond at your convience.
Jofree

At the beginning , it does seem overwhelming….facing something so life changing without much information is very challenging…one thing we are all warned about is using Google, which can scare one unnecessarily…asking questions from docs and team is better early on…the nurses/NPs are especially helpful and are a lifeline….if you have someone in your circle who’s been through this, they can help with any researching you do as time goes on…this site and Colontown are very useful…Colontown especially helpful in these matters, a very helpful site/community, with expert info always available. Wishing you the best !

The word cancer is always overwhelming and scary.Please wait for the initial work ups and complete diagnosis.It is easy to say calm down but it is the most difficult thing to do.Please dont start researching at this stage.If you are going to be blessed with an initial stage and complete clearance,all these anxieties will vanish.We all wish you that blessing.Trust your doctors and it helped me a lot.I never went near Google till my treatment plans were over.Mine was stage 3B and I have survived since diagnosis in July 2017.Transfering all my blessings to you.God bless you

@premi right on !

@dude63, welcome. I hope you saw the helpful comments from @nycmusic @premi @jofree and others. You're asking good questions. Have you had a follow-up appointment with your doctor to find out more about next steps? Has surgery been recommended?

Thank you. My husband and I are in the middle of the workup. It is scary. We did have an appointment with a colorectal surgeon on Friday and tomorrow is our second appointment with the oncologist. I wonder what you think about asking the oncologist to refer to a different surgeon - because on Friday, when talking to us, the surgeon commented on how big the tumor is (it’s 4 to 5 cm). “Wow, it’s really big!” she said, with a big smile while she demonstrated with her fingers. I’m thinking, wow, now here’s a very unprofessional doctor. She may be good, but to say something like that, I don’t know. We don’t even have staging yet, but anyway, a bad feeling about this one.

@hopeseeker22 - Amen! I dumped two oncologists and one supposedly, world-class surgeon. Don’t hesitate to get as many opinions as it takes to find the right medical practitioners for you. Also, do lots and lots of research so you are prepared to ask good questions. There’s a wealth of information on the internet.

@jaspithill1946 if in doubt at all, seek 2nd or 3rd opinions if necessary…having docs that inspire confidence is huge ! Ideally, they are partners in healing.

@jaspithill1946

You are so RIGHT about looking for public and patient reviews and reactions. No, you can’t please everybody all the time. But I DO count the stars and read the comments, and make my own decision. Good for YOU! Thanks.

Hi Jeff,
How are you doing? Cancer as a word is scary. My road has been up and down. It was definitely scary in the beginning. I know google isn’t recommended, but for me I actually found researching in between visits with my Doctors was necessary to help me cope. I need to ruminate on things before making decisions so the more information the better. If I hadn’t googled I never would have found this support group. Not everything should be googled and certainly when you do it’s best to check with your doctor on the validity. As far as staging its letters and numbers like a school paper. The higher the number and letter the farther along you are. Mine was Stage 3C when first diagnosed. Currently Stage 4 now and on lifetime regimen to maintain as long as my body will handle it or it stops working. I have found this isn’t the norm. Mine was on the right side of the colon which has a worse prognosis and doesn’t act like colon cancer. Most will go thru surgery to remove it and thats when you will get your staging. They should let you know how many lymph nodes were removed and how many were infected if any and if the tumor was attached or infiltration to any other sections. Mine was into my lining and I had 48 nodes removed with 43 infected. Ask about diet. After surgery the bathroom was a scary place. They don’t tell you about how to go when you get home and are constipated. You can’t push! I was stuck for hours… literally. Have prune juice on the ready in your bathroom! Or smooth moving tea. Most embarrassing moment in my life! I had to call my sister. She googled best positions to sit in to help. Its a whole thing!!! At least for me. I advise you to drink drink drink! Prepare if you haven’t already for surgery by eating a LOT of protein and building up your muscles if you are not in great shape. You will be needing the boost afterwards when you can’t move. I needed a tummy pillow to help roll over because I was told not to use my tummy to do it and it helps with the pain and also seatbelts. When is your surgery? Have they decided that yet? Mine was boom boom boom. Colonoscopy on Friday, saw surgeon the Monday after with pics of bleeding tumor to show as instructed by the dr who did the colonoscopy and surgery was planned for 1 month from there to give me time to get my muscles ready. I do recommend a port for chemo if thats your route. Its been a lifesaver. Surround yourself with friends family and church. My walk with God and their support and this group got me thru dark times. And there will be many of those. But let laughter and love in and let them love you. This effects everyone and thing in your life… but remember you have one and keep living it! You got this. It doesn’t necessarily mean a death sentence. So don’t look at odds. You are not a statistic Jeff. You will be a fighter! God bless you, and know you aren’t alone even at 3 am.