Diagnosed with colon cancer: Nervous..Help!

How do I stay on top of things? I read a lot online from trustworthy sources. I joined this forum site. I ask a lot of question to my doctors and get at least two opinions (which I did not really do the very first time). I have to feel comfortable with the doctors, so I can feel I can really trust them.

I hope your husband's prognosis will be a good one and that both of you will feel confident he's getting the best of care available.

Hello @lindadob and welcome to Mayo Connect. It looks like you have already received some good support and information from others in this discussion group including @predictable and @paul28.

As they have said, it is important to find a good oncologist and to learn the best way to eat after this type of surgery. If you ask for a consultation with a registered dietician before your husband is discharged from the hospital, this will so very helpful to you. As your husband's digestive tract is healing from the surgery, he probably will not be able to eat three larger meals, but will need smaller, more frequent meals that are "smart." In other words, not high in fat and roughage.

Have you had an appointment with a surgeon yet?

As a colon cancer survivor, let me relate my journey with dealing with it. Everyone's experience and situation is different.

I had a lot of difficulty with diverticula in the years prior which my medical team couldn't address. I finally got a positive ColoGuard test which was followed up with a colonoscopy. I was actually pleased with the ColoGuard test because after several years, the medical team wasn't getting my colon issues addressed.

I was awake during the colonoscopy, saw the blackish mess on the monitor and remarked that it didn't look good at all. The Dr. doing the scope agreed, marked it, took 5-6 biopsies for analysis. Results came back and I chose to be referred to Mayo in Rochester.

Mayo did scans, verified the colon issues/location, but those scans found more issues - nodules in my thyroid, 5-6 spots on my lungs, liver cysts and a bunch of kidneys cysts. All except the kidney cysts were ah, surprises. I subsequently got scheduled for colon surgery.

Mayo used robotic assisted small incision surgery. Recommended. Once in there they removed the cancerous area and surrounding lymph nodes and then looked at the diverticula damaged part and decided to remove the entire colon, connecting the small intestine to the rectum. I was in the hospital 3 days, went home on a Saturday and felt good enough to blow snow for 2 hours on Sunday on my garden tractor. The surgery was the easy part. I do recall having self-administered shots of Heparin for 28 days after the surgery - the hospital trained me how to give those.

Then I consulted the Oncology team - they strongly recommended chemo even though the surgeons "thought they got it all". (I wasn't taking any chances.) Besides the colon, they took out 108 surrounding lymph nodes - maybe 12 or so were malignant. Oncology rated it as a stage 3C.

I had a chemo port installed outpatient and went through the training for the port. If you do chemo, the port is highly recommended and will save you pain over the long term. The surgery to install the port wasn't difficult, but there was minor pain/discomfort thereafter for a week. My port was later removed with an outpatient surgery which was even easier. Once that port is installed, it must be regularly flushed (monthly) so once you are done with chemo and are "in the clear", it can (and should) be removed.

I started with the FOLFOX6 protocol. 12 cycles at 2 week intervals between cycles. It was nasty - so nasty that after a few cycles I had to drop the OX (a.k.a. oxaliplatin), but stayed on the 5FU - delivered by IV with infusion pump. They give a 10ml kicker of some steroid, along with Leucovorin, then they follow with ~ 2 hrs of oxaliplatin, then start a 44-46 hour infusion of the 5FU with a portable infusion pump you take home. You come back to the infusion center to return the pump and they disconnect you.

For the first 4-5 days of a cycle, you gradually get weaker, more tired and more side effects reaching the low point on day 5, then you gradually improve until you go back for the next cycle.
At the beginning of each cycle they do vitals and blood work to see if that's OK to do. The catch is that you don't get back to 100% at the end of the cycle - more like 95% - thus each cycle wears you down a bit more. My nurses told me nobody successfully completes the protocol in 26 weeks. Adjustments or breaks are necessary.

In my case, I had several stops my 12 week plan ended being 16 weeks. They had to check some cardiac issues, some neurological issues and one to enable a short rest. The Oncology Team adjusted things so I could complete them.

Side effects were largely neurological - numbness/tingling in feet/fingers, mouth/throat. Difficulty swallowing. Could neither eat or drink hot/cold things. It's common to have to wear gloves to grab stuff from the refrigerator. These did improve for me once they dropped the oxaliplatin. Otherwise fatigue, lethargy and low energy. I had serious balance/dizziness issues. Those down/up cycles were hard. Tried to be as functional as possible when feeling relatively good. One of the good things that happened during this was to read through the entire Bible and to spend more quality time in prayer. Faith helps immensely.

These side effects continue for a prolonged time after chemo is stopped. The figure I read was 1-2 months for even month you have chemo which was what I experienced.

Once chemo is done, they keep doing scans and blood work at 90 day intervals watching to see what the chemo does, whether you need more (Ick) and whether the cancer has spread elsewhere. If no further treatment is necessary, after a year they do the scans/blood work every 6 months and if all is good, eventually every year. I haven't yet gotten that far, but so far I'm cancer-free - none of the 12 or so things the scans picked up have changed, so they aren't malignant.

What else can I say?

Cancer is largely treatable -especially when caught early. It's not a death sentence. Attitude is key. You can beat this. Getting through chemo, I called it patient insistence - insistent that I don't give up and I keep going, and patient to do what I could but not beat myself up for my weaknesses. My infusion team was very supportive... even after I got a severe vertigo attack while getting weighed and fell on one - poor Heidi. I got a very quick ride in a wheelchair to the ER that time!

Knowledge is power. Don't live with the fear of the unknown, Do research from credible resources to know precisely what you're dealing with, how the treatment works and what you can expect. You want to eliminate fear, uncertainty and doubt as much as possible.

I strongly recommend a driver and someone healthy to help care of you like a spouse, family or close friend. Mayo was 42 miles away. The hospital I had infusion/scans at was about 45 miles (1 hour drive) using county highways. One of the last things you want to do is drive an hour to the infusion center to return that portable pump and drive the hour back when that chemo is kicking in full force. I was fortunate to be so close to a major cancer center - I don't know specifics, but most have low cost guest housing for cancer patients.

You will have to adjust a lot of things during and after chemo - from what you eat, to frequency, temperature (room temperature pizza - yuk), anti-nausea medications, etc. Chemo also beats you immune system down. I had chemo when COVID was red hot and I went nowhere except to medical providers and close family. I didn't loosen that protocol up until 9 months after chemo was done. Follow what your Oncology Team recommends.

The neurological effects of chemo vary with the individual - anything/everything that uses the nervous system will likely be impaired for a while. Taste, sense of smell, vision, hearing all can be effected. Don't panic when you run into these. These generally go away with time after chemo is complete. Again patience is vital. So is support of friends and family.

I'm certain there are things I missed - I hope long epistle is helpful.

All the best to you.

PRAISE God my polyps were okay but two were precancerous and colonoscopy in three years.. So just have to keep an eye out and at 75 in beyond thankful
I pray for all here…. What an idiot I was… get your colonoscopy TRUST me

We met with the surgeon today. It will depend on the ct scan which was also done today. If it shows spread chemo first then surgery then chemo. I am hoping we start with surgery.

The surgeon also said he could work doing chemo but I am worried he won’t be able to

I hope you keep in touch, @lindadob. I hope that you get a treatment plan that works well for you.

Hi @lindadob, For early-stage colon cancer, surgery may be all that is necessary. Chemotherapy for colon cancer is usually given after surgery if the cancer is large or has spread to the lymph nodes. Chemotherapy can kill cancer cells that might be left after surgery. This helps reduce the risk of the cancer coming back. Chemotherapy might also be used before surgery to shrink a large cancer so that it's easier to remove. Read more from Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/colon-cancer/diagnosis-treatment/drc-20353674

How did the CT scan go? Do you know what stage of cancer your husband has?

I did not get the results back yet. I am hoping it has not spread to organs. I should know Monday or Tuesday. If it has not spread surgery first then most likely chemo because it is large 5cm

Surgery is scheduled for January 30. After that healing and we will need an oncologist since there is a .4cm lesion on liver suspicious and .3cm on long. He wants to do surgery first though and then we will work on chemo and treatment after.