Diagnosed with colon cancer: Nervous..Help!

thanks but I am not a hugger was never allowed nor was crying if you did you just got beat more What I need is a medical facility that will fix this issue & not drag it out & not keep me in the dark. Issue has been going on since July. Last hospital told me to just go away & die How nice

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.

I have one more question how long of a recovery you think it would be for I can to swim, bike and run? Like I said, I’m a very active person I do Triathlon I’ve done 10 Ironmans.

After removal of 25% of my large intestine via laparoscopic surgery I was walking in 6 hr, spent three days in hospital, was able to go hunting with my dogs in 6 weeks, very few side effects. Just be sure to manage your pain during the first six weeks, take max doses of Tylenol and ibuprofen staggered. Have faith! Was splitting wood yesterday and I'm 70!

There has been no mention of a followup PET. My GI Dr. said cancer is "biopsy proven" and I absolutely have to go forward with surgery Feb 19.

😊 Thank you!
I’m very nervous my surgery is tomorrow they are removing the right side of my colon detaching it from the small intestine, and then reattaching attaching plus removing some lymph nose around it.

😊 Thank you!
I’m very nervous my surgery is tomorrow they are removing the right side of my colon detaching it from the small intestine, and then reattaching attaching plus removing some lymph nose around it.

What you say makes complete sense!!!!! I have had MANY colon surgeries at Mayo in Rochester. I met the Doc on a Thurs. had an exam and tests. Friday we received test results. Monday I was in surgery. I COMPLETELY trusted the Doctors and staff at Mayo. I was scared but put trust in G-D and my surgeon. I carried my rosary beads with me in a plastic bag. _lease know that you haver a lot of people praying for you!!!!!

I am always available for "talks" when you feel like writing.

Linda

I hope all goes well. I'll be sending great energy your way.

hola soy Daniela , con cancer colorectal, hace 1 mes, ya me operaron y estoy aprendiendo como alimentarme, sería de mucha utilidad , si compartes por favor que alimentos son los saludables para nosotros. muchisimas gracias