Confused and shocked

[lorrainem]

Welcome to the right place to get information from peers. All of the information received is helpful and there is still so much you do not know but will learn, sadly we all do.
The one thing I haven't seen mentioned, and if it has been I am sorry to repeat, one of the most important factors in your treatment may be surgery. If so, the services of a board certified colorectal surgeon are imperative.
The sigmoid area is low, and there are no guarantees as to needing a diversion (ostomy) either temporary or permanent, but the most skilled general surgeon is not up to the speed that a colorectal specialist is.
Keep coming back as you will learn more each time, and when you have your full test results, the experienced members here can give you more information on their own experience.
What has been said already is true, with the same disease we are all different, so you can cull the information that pertains to you for getting your questions together whenever you see your docs.
Best wishes as you begin the journey.

[Notam]

Thank you ALL. Every post has been helpful to me.

I have subsequently seen a surgeon, established a "nurse navigator" and told my children

I underwent a CT of my abdomen, an MRI of my abdomen, and have a PET scan forts thing tomorrow.

My CEA is Bly 1.8, but the CT diagnosed me as T3N2. I have no idea what that really means.

This is overwhelming.

[singingholly]

By now, if the situation remains as ct scan says, it means that you will have adjuvant chemo, probably folfox regimen for 8 cycles, after surgery, that is to say a therapy to prevent mets. Not fun but not the end of the world, then you could also be free. Forever..!
Let us know.
A hug.
H.

[horizon]

I can relate completely to what you wrote because that's exactly what happened to me. Just having to wait between tests during that stage is agony. I got a second opinion and decided to go with a specialist for my surgery. The biggest mistake I made was looking on Google for survival rates. That sent me into a tailspin. Talking to people on here that knew what I was going through helped a lot. After my (laproscopic) surgery I did six months of chemo. So far so good for me right now. There can be light at the end of the tunnel. Try to just take things one day at a time. It's really tough at the part you're at now.

[Notam]

First, thank you all for your advice, words of encouragement and affirmations.

After MRI's, PET scans, CT scans, another flex sigmoidoscopy, consults with radiation oncologist, medical oncologist, surgeon, and radiologist, her is where we land :

Apparently a stage 3B recto sigmoid tumor near the junction but definitely in sigmoid. It seems localized with some surrounding nodes appearing larger than others.
CEA 1.8
All other blood work normal! All other scans clear and organs okay.

Plan:
Chemo radiation for 5 weeks ( target radiation 5 days a week - had "tats" inked today. Chemo of Capecitabine twice a day during radiation. Laparoscopic resection in about 8 weeks. This will be followed by IV 24/7 chemo for 12 rounds - if tolerated - to ensure curative results. All docs talk confidently that we should do okay, but things could change as we move forward.

Does the fear ever go away?
What might I expect from side effects, ability to work through this pre-surgery treatment?
What is the recovery time after laparoscopic removal of 3 inches of sigmoid colon, the blood supply and surrounding lymph nodes?

I feel having the quality care and insurance has been a blessing. My co-pay on chemo is only $45.

[horizon]

Does the fear ever go away?

When I was where you were at I was afraid my life as I knew it was over. In a way it was. I would be lying if I said I didn't think about cancer every day BUT I can go long stretches without thinking about it. That was unthinkable to me at the beginning.

[Margo]

Be strong, this is a very difficult time, but it's hope everything will be fine. Look at my signature, almost
7 years after !! My husband is doing great. Good luck

[kellywin]

The fear is so overwhelming at this point I know. But it does get better. Radiation is scary, the nurses scared the crap out of me. I kept waiting for all these horrid things to happen. But they didn't. Radiation for me wasn't that bad. I worked throughout it, everyday, and I told no one at my work, no one knew until I had finished and had a surgery date scheduled. Just remember everyone has a different experience and it doesn't have to be all bad. There were days that sucked, but it didn't stop me from doing anything I needed or wanted to do. Really important thing, lotion, lotion, lotion. Everywhere in the radiation field, and I mean EVERYWHERE. I'd take mine with me to radiation and put it on directly after and then again before bed. Also, stock up on calmoseptine, it's over the counter, but you might have to ask the Pharmacist for it. You can't use it until after your radiation treatments each day, but it will definitly help with the soreness. The Xeloda (Capecitabine) I tolerated fine, but it can cause issues with the hands and feet, so lotion up them too.

The laparoscopic surgery recovery for me was about 4 weeks. I could have gone back to work no problem (and as I've said on here before, I went snow skiing for 2 days 4 weeks after surgery) but I needed extra time mentally, so I was off work about 8 weeks. That way I had a chemo infusion done and I knew what to expect before I went back to work.

I know how overwhelming this all is. Try and take it one step at a time.

[rkolo]

I'm very sorry to hear that, though I'm not surprised when I hear of poor professional practice in diagnosis, my father (71) was diagnosed with stage IV colon cancer, liver and peritoneum mets, he was diagnosed on his own (no family) in a 6 bedded unit, so the 5 other patients heard his prognosis before we did, THIS SHOULD NOT HAPPEN, I wish you well

[Staci's team]

Notam, others here have given you good information on what to expect now and what needs to be done, so I'll leave that info alone for the time being. I wanted to shed some light on the timing, since what you mentioned in your post is as little different than what many neoadjuvant chemo patients get.

I certainly understand the 5 weeks of Xeloda plus radiation....but be aware that it might actually end up being a little longer than 5 weeks. Staci's was scheduled to only be 25 sessions, but when she was about a week away from being done, her radiation oncologist and medical oncologist decided that she could probably benefit from 3 more "booster" sessions at the end. That was high dose stuff that was supposed to be like the cannons at the end of the 1812 Overture, if you get my drift.

Your surgery will likely be 8 weeks out from the end of radiation, not from today. Radiation is "the gift that keeps on giving," and most of the recent research indicates that a break of at least 8 weeks, if not 12, if preferable to allow the radiation to continue to kill tumor cells while also allowing for recovery prior to surgery.

I didn't want to be the downer, but those timeframes just seemed off....and I know how it threw Staci for a loop when she thought she only had 5 days left and they told her that she needed to do the additional 3.


Chris

[Cured]

Hey Notam, You sound nearly identical to me. But a I am almost 6 years ahead of you. Although the technical term is not used, I AM CURED. Feel great and living a normal life.

Read my signature and you will see that your plan mirrors what my Drs. put me through. Another pert of this gives pause: I pooped in a bag for 6 months. It was a little inconvenient, but nearly forgotten now. Heck I rarely even reflect on the whole set of stuff I had to go through. You just have to endure the treatments to get the good results. My surgeon said the likelihood I would have an illeostomy was 50/50 before the surgery. But I am so glad that he was able to get clear margins around the whole Rectal area and reconnect me. The months during the Illeosomy allowed my colon to heal from the surgery. I byproduct of being on the bag was that it was easier to deal with the chemo effects. Waring you now that during the initial chemo with radiation you will have diarrhea. The nurses should clue you in on all of this.

Pray. Get right with God and your family.

You can make it through the treatments.