Diagnosed with colon cancer: Nervous..Help!

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.

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

I imagine that being organic makes all things better ? .....
Egg yolks are high in cholesterol and a source of saturated fatty acids and as such are not heart healthy.
Cardiologists have written about egg yolks as being a heart disease risk.
My latest research is the health dangers of artificial sweeteners.
Sucralose and Aspertame are best avoided. Stevia or stevia leaf by Truvia seems to be the only natural sweetener not related to bad things.
I have eliminated a hundred things from my grocery cart.
Cancer patients and especially those of us with bowel cancers, need to be reading the nutrition labels on everything we buy and know the meaning of it all.

I think you need to go to a cancer specialist and get a second opinion. I had stage 3 colon cancer nearly 3 years ago and my sigmoid colon was removed. I’ve since used two hospitals one was useless one was excellent. I too wear a bag but you do get used to it. It is saving your life. In my experience it is all down to the hospital and the staff. Best of luck and may you find the help you deserve.

Any suggestions July had a positive colon guard test strike 1 Had colonscopy with questionable polyps strike 2 saw a GI person terrible doc took 2 samples of ? poly cancer contained but network system dragged it out with ever possible tests & repeat same tests just looking to make a buck strike 3 Went to medical center had polp removed it went from a postage stamp size to ping pong size in 3 months Margins not clear. Oncologists & radiologist said surgery will fix this Tumor is on the sphincter muscle Saw surgeon options surgeon suggested removal of cancer & muscles but then have to live with a bag strike 4 do nothing or radio & chemo Husband is living in the world that everything will be sunshins & roses wrong Primary hands out pats on the head & does nothing Insurance company is not cooperating on paying Have another MRI 8 weeks after poly surgery & then have to wait 2 more weeks for results & suggestions Which will be the answer of sorry go crawl in a hole & died. Difficult to find clothes that fit with out a 5 gallon bag hanging on my waist Have expressed how can I keep showing horse with a 5 gallon bag on my waist No answer Sorry this is long but am trying to find some help This has been going on for 8 months with tests no help Suggestions please

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.

Most people who have this surgery recover fully. They are able to do most of the activities they were doing before their surgery. Sending prayers for a complete recovery!