Shaken Not Stirred...

Jaraxle
Jaraxle Member Posts: 5 Member
edited October 2022 in Colorectal Cancer #1

Hello

I know there are no easy answers but I am hoping to get some insight if possible about my path forward.

About me -- I am 51 and live in Huntsville Alabama. I weigh about 160, never been sick much, and overall pretty healthy. I eat pretty well and use to run pretty regularly until this year when we moved to AL. Dont drink or smoke no history of cancer in family. I have a disabled wife and a disabled special needs daughter.

I just went in for my first ever colonoscopy on Sept 1. No symptoms, just routine. They found a 5 inch mass at the bottom of my colon and that almost completely blocking my lower intestine. My doc put me in touch with a surgeon and the following week Sept 8, I had the surgery.

Here is what I know --

Coloscopy showed no pollups.

CT scan came back clean.

Surgeon successfully removed tumor and did not see any other signs of growths, etc.

Surgeon was able to harvest 21 lymph nodes and sent tumor and nodes off for biopsy.

My actual surgeon (who is fantastic) is out on vacation, returning Oct 2. I got the results from the biopsy from one of his collogues. The biopsy showed cancer in 2 of the 21 nodes. He wanted to go ahead and refer me to an oncologist.

My questions here are--

Should I go ahead and see an oncologist or wait and let me surgeon refer me to the one he wants me to see?

How bad is it, if its in 2 of the 21 nodes but not visible anywhere else as of yet?

Do I go with what the oncologist tells me or seek second opinion?

This has caught me and my family completely off guard. Like most I have no real knowledge of cancer and what to expect although I am not learning. My nature is to trust the experts as they should know whats best but would like to get some insight from those that have already gone through this.

Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    edited September 2022 #2

    Wait for the pathology report then have 2-3 consults with surgeons (perferably board certified in CRC as they should be included in your follow up care). Set up consults with 2-3 oncologists also. Record all appts. I can not stress this enough. There will be alot of information and you need to be able to review it after the appts. Compare their advice on the path forward.

    Where was surgery performed?

    What was your CEA? Is it a good marker for you?

    I would advice expanded bloodwork before any adjuvent treatment begins. It will be important information now. You can research here for expanded bloodwork and also on colon talk.

    I might have more questions/info after I think about it some more.

  • Jaraxle
    Jaraxle Member Posts: 5 Member
    #3

    Thank you SnapDragon2! I appreciate you taking the time to respond. You have given me a path forward. Here are the answers to your questions that I know.

    Surgery was performed at Huntsville Hospital. It was performed robotically. The surgeon went out of his way to get me in as quickly as he could. He also called me from his vacation the day following the surgery so that really impressed me that he cared enough for someone he just met a week prior.

    I looked over my hospital records and I do NOT see anything referring to "carcinoembryonic" or CEA so I can only assume they did not run the test. I am a little perplexed they didn't as I have an official Colon Cancer diagnosis but the more I thought about it, maybe they didn't as I had the tumor in my body at that point.

    I will update once I have the appointment with the first oncologist and be sure to ask him to request a full expanded blood work as well as the CEA test.

    Does anyone have any good incite into the oncologists in Huntsville Alabama? If you have someone you really like or dislike, feel free to message me. I am only assuming the forum probably does not like people posting Drs names.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #4

    I am fimilar with Huntsville, AL. a little bit. From what I hear Huntsville is typically standard of care. You already missed some crucial info from your post, CEA is one! UAB should be considered for a consult also. They are in the top 10 of treatment centers I think. They offer standard chemo per the guidelines and also perform other testing, more cancer markers, ect and may put you in a better position with a better plan. They can tailor your treatment to be administered in your home town of Huntsville. You don't have all newer possible options until you hunt for them,

    I hope you researched expanded bloodwork. It has helped me more than scans as it will show possible activity far sooner than a scan will pick up anything so you can act sooner.

    Get the full path report, go over it word by word and research to find the significance.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited September 2022 #5

    Tough breaks, sorry you are here. Your situation does not sound too different from mine, although that was 5.5 years ago, and hopefully treatments have evolved. I would guess you will most likely be encouraged to have chemotherapy. That will be a heck of a tough decision, although with family depending on you, one might guess you will likely do all you can to be there for them. For some, CEA is a helpful indicator, for me it was not. There is a lot to learn, and there are strategies that you can adopt to optimize your chances for good health. Immediately post-surgery, you might want to take a look at cimetidine. You could also have your vitamin D levels tested. You might also want to take a look at research on pubmed. I spent countless hours on that site, but maybe it was just to give me the feeling that I had some control over my fate. Best of luck to you in facing all of these challenges.

    Cimetidine? — Cancer Survivors Network

    PubMed (nih.gov)

  • Chris2328
    Chris2328 Member Posts: 19 Member
    #6

    I have some specific advice. If the recommended treatment is 5 FU (aka Folifox), make sure you have them do a DPD test. If you do not have enough of this enzyme, the treatment can act as a neurotoxin, and create all kinds of havoc, and is deadly in some cases. I know this because I was the first person in my oncology practice that was tested, and I have this deficiency.

    The solution is to cut back by 50% or more on one of the components. Make sure you ask, and if your oncologist is not willing to run the test, get a new oncologist.

    Good luck. Will be sending thoughts your way.

  • b37pht
    b37pht Member Posts: 1 Member
    #7

    Hello everybody,😀

    I am a new memeber just today 10/14/22 . I've been reading for quite awhile since I heard the " C" word 😣from the doctor who did my first colonospy on the second week of August . He found mass about 3 cm. long and I was good luck enough to get surgery on 31st same month becuase someone canceled the appointment ( my super nice surgeon said he was booked at least 3-4 months and I didn't have that much time to wait )


    The first month while waiting to meet a surgeon was one of the worst time in our lives ( me and my spouse ) but everything was happening so quickly, I didn't have much time to depress. But strangely , after 3 days in pain trying to force myself to walk on the hallway of hospital to prove all the nice nurses and doctors I was well enough to go back home, I remembered my spouse helped me walked without wheelchair down the building to our parked car . It was a sunny day, and I felt like I was reborn again. I was so grateful to the doctors and nurses that treated me so nice and I should do my part by walking everyday, so I don't have complication ( I was so worried about my bowe movement).


    My CEA was 4.8 before down to 2.00 after surgery in about a month. They found 0 out of 28 lymp nodes. Now I'm been on Xeloda for 5 days already. I am quite well tolerate ( lucky becuase I am also Asian got to do with it ) I think ,other than I'm still waiting to talk with couselor ( I have not talk with anyone from mental health department yet, because of shortage and covid effect).


    I'm sorry to tell my own story in this reply, but my story to tell is I trusted my hospital and my medical team 100% . Not that I have not done research or anything, I did read a lot ,probably more than I should. About surgeon, I think experiences are the keys . The more is the better especially the recurrent rate. If we asked our surgeon about chemo drug, he tried not to say much becuase that not his job, even though he knew a lot about it. In my HMO I think asking the right question to the right person help smooth things out and we will get the right answer that we need.


    I am so glad that I've found this webboard. I do feel that I'm not alone when somebody said " SORRY THAT YOU ARE HERE " becuase nobody knows how I feel even my spouse ( he keeps saying that it's gone you have no cancer now. --- Mmmmm! I am just speechless LOL😅 ) To get the anger and frustration out, I just bought a new reciever and streaming Amazon Music " Trance lift off Radio " very loud ( before sun set LOL 😋)seem help. I'm sorry for the rant and English isn't my second language I have to apologise.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #8

    Isn't it amazing how beautiful the outside world can be after days in a hospital. I can still recall the smell of the fresh air and the bright sun and colors hitting my eyes, 14 years later. No affected nodes and chemo isn't kicking you butt? I'd say you're doing very well, and have much to be happy about. The blood panels every 3 months or so, will tighten up the anxiety levels, but you're free to come and unload all that stuff you can't say elsewhere. It's why I finally joined in here, it's what this place is for. Welcome.........................................Dave

Discussion Boards