He is confident that it is cancer but doesn't know what stage. He has referred me to a good surgeon, whose office will call me next week to set up an appointment.
Meanwhile, he gave me a referral for a "CT scan of chest, abdomen and pelvis with PO & IV Contrast." He wants to see if the cancer has spread. I am getting the scan a week from today.
I got the colonoscopy only after taking Equius for newly diagnosed A-fib, which caused rectal bleeding. I did not have a colonoscopy before. I never had any symptoms before, and I have not lost weight or am I anemic now.
However, it appears I have colon cancer in my lower rectum.
Now, for my question: has anyone had a similar situation with cancer? If so, how did you cope and what kind of treatment or success rate did you have?
Right now, I feel like I have a death sentence. I know that is negative, but it is how I feel. Any thoughts or shared experiences would be appreciated.
Thanks.
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CED48
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Thanks for posting with us. I am so sorry you’re having to deal with this. Your post actually took me back to 2012 when reality hit me. Not where I like to go, but I never will forget it. I had a lump in my right abdomen that had become tender to the touch and when I told my doctor about it he said “let’s get that checked out”. I don’t go to doctors much and the only reason I went this time was to get a physical so I could get cheaper insurance at the company that I work for. Two days after I had my physical I had a CT scan. A couple of days after that I was standing in front of a surgeon. He told me “that’s coming out and that’s coming out now.” I had not had a colonoscopy ever at that point and the surgeon said I needed one. He left the room and came back 5 minutes later telling me my colonoscopy is the next morning at 10:00 AM. The colonoscopy procedure was unable to get past the mass that was growing out of my colon. A couple of days after that I had a partial colectomy surgery and during the recovery they hooked me up with a very good oncologist. Oh crap, I need an Oncologist😲 So, it was game on in a very serious way. A very tough thing to deal with is accepting this is real. It's happening. It kinda made me mad. I wanted it gone asap.
If you have ever played any sports in your life, I look at cancer as the opponent you don’t want to play but now you have to. I never spent any time thinking about the signs that I missed or why I am where I am now. I just knew that cancer was the opponent that I had to play and I needed to defeat. I did not know how to fight cancer. That was huge. I had no idea. I made sure I had good doctors on my team and I had to trust them. The things I could control I call being the "best patient I could be." I didn’t know how to fight cancer, but I could keep a positive attitude, exercise, nutrition, hydration, faith … we’re all things I could control. My body is the playing field and I needed to do what I can to help the doctors do what they do.
I see so many advancements in cancer research since I was diagnosed and it is very encouraging. But you have to realize that everyone’s an individual. It’s frustrating to see some going through similar situations that I had and not have the outcome that I did. For me, I spent over two years doing chemo and radiation and the cancer kept coming back. There wasn’t a whole lot on the table at that point in 2014, so I went out and got a second and third opinion and that made me realize that the path I was on currently was the best path to be on. Soon after those opinions were obtained, I was contacted about a clinical trial that may be beneficial. The trial was with an immunotherapy drug approved for certain lung and melanoma cancers. I had stage 4 colon cancer. I have Lynch syndrome which is hereditary. So here’s a clinical trial with an immunotherapy drug untested against my cancer. But this clinical trial proved to be the game changer👍. After the first infusion, the tumor shrank more than all the chemo and radiation had done in the past. I finely felt like I was playing offense now. I had two cousins pass away at the ages of 36 and 41 and yet here I am today surviving it. The research is always coming up with new things.
Please know it is not a death sentence. It is however a fight that chose you. Never feel you’ve done something wrong. The CT scan is gonna see if this has metastasized to certain areas. You and your surgeon will discuss next steps in trying to get this mass removed. You should be in for some genetic testing so you can know your biomarkers. Your biomarkers are how the research and known therapies will find you. Today, therapies are very targeted and specific to the patient. The more you know about you the better off you’re going to be. That’s where the genetic testing comes into play. These days it’s more about the mutation than it is about the tumor type (colon, lung, pancreatic, etc). Have the “malignant-looking mass” sequenced (NGS – Next Generation Sequencing) so you know all about it. For me, certain lung and melanoma mutations were found to have similar biomarkers with my colon cancer. You never know where a beneficial therapy will come from. Maybe there’s something out there already? Maybe there’s a trial going on you can qualify for.
I do wish you the best. The journey isn’t easy. It’s a fight. Know this .. it is winnable!!!! Why not for you???👍❤️💪 In my family, cancer has taken 5 family members and yet I’m still here. I was diagnosed at age 49 with a 17% chance to see age 54. I'm 14 years from diagnosis and 9 years NED (No Evidence of Disease). Please keep us up to speed on what you find out from your CT scan. No one fights alone my friend. I have more for you, but let's see what the CT scan has to say first.
All the best friend,
~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.
Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.
God bless you, Tom. Your reply has made a dark day brighter. You covered so many important points, I, like you, never ran to doctors, and I have enjoyed good health. However, like a flash of lightning, cancer has struck me and many others. Your story gives me hope, I will let you and the group know how my CT scan comes out. Thanks, again for the sage advice and counsel.
Tom - You are such an amazing, caring person! The time you take to speak with so many of us here to lessen our fears is incredible. You were so kind to me when I was scared sh**less several months ago and please know so many of us are so very thankful you are here walking us through dark days. Thank you so so much!
CED48, try and remain positive and please do let us know how your CT scan comes out.
Since I posted here, I am well on my way in my Cancer Journey, which has now been diagnosed as rectal cancer. I was referred to a surgon by my GI docter, who also ordered a CT with IV Contrast. Thanks to God, the CT came out showing no spread to the lymp nodes, nearby organs or faraway organs. This was positive. The surgeon ordered a signmoidoscopy so he could see exactly where the tumor was located, which I completed yesterday, which lead him to pronounce my colon cancer in the sigmoid section: rectal cancer. Afterwards, he told me he was ordering an MRI without contast of my pelvic area to examine the turmor as part of staging. He said, based on current info, it was reasonable to project my cancer is a Stage 2 or Stage 3. Since it is rectal cancer, he said that once the MRI comes in, he will probably send me to an Oncologist who will start me on Chemo and Radiation to shrink the turmor before operating on it. I am hoping for the best and trying to stay positive. But, I would be not be honest, if I said there aren't times when I feel like the bottom has fallen out. When this happens, I take a walk, pray and try to do something for someone else. I will update you all, once I get more complete staging prognosis. Again, thanks to you, Tom and everyone in this forum for their support!
Hi CED48, Your update brings a tear and a big smile to my face😁. Even thought it is rectal cancer and that is unfortunate, you found it in time, and you are well on your way to defeating it. It has not metastasized to other parts of the body which is so encouraging. I am sure they were as excited to find that out as you were. You’ve got a solid team working on it with you. The plan sounds solid as I see a lot of this as the approach … shrink the tumor and then take it out.
You are also doing great taking care of “you”. That’s important. I remember when I was in so much pain and couldn’t sleep (even after taking a bunch of narcotics) , I’d go for a walk. 2 o’clock in the morning, it didn’t matter. Cancer owned the pain, but I owned the walk. I was doing something I was in control of. That gave me some “positive” at least at that moment. Taking a walk, praying, doing something for someone else is all you taking action that you are in control of. You own that. Cancer hates it when you do that. I describe it as putting a face on cancer. I would talk to it. I’d say “really cancer. All this pain. Let’s go for a walk.” Doing things cancer is trying to stop you from doing is “getting in cancer’s face”. It’s a win when you can generate an activity you enjoy in the face of cancer trying to wear you down.
You are doing an amazing job managing this. It’s not easy. But it is necessary. You always have to give ground to cancer. But always have a plan to take that ground back. The chemo will wear you down. It can be fatiguing among other things. It’s ok to rest when you need to. But you control a lot of things that are as beneficial as getting the chemo. You control hydration, nutrition, exercise, faith, and attitude. You are doing just that.🤟💪❤️
Thanks, Tom for the kind words and encouragement. I am trying with all of my might to prevail again this beast called cancer. Perhaps a positive out of this is that it has changed my perceptive on everything. My world post-Cancer is a place where what mattered to me pre-Cancer seems insignificant and silly. If nothing else, Cancer has cleared my vision and prioritized my life and faith. I will keep you all updated. Again, thank you.
UPDATE: After my sigmoidoscopy, my surgeon ordered a Pelvic MRI in helping to stage my rectal cancer. The outside provider screwed up the order and I had to wait more than 7 hours to get the MRI. However, I waited, because I wanted to get some resolution. This Monday the results came in and the MRI radiologist came up with a Stage: T3c, N1. It showed a suspicious lymph node close to the rectal area, which puts my stage at III regional. My surgeon called me, told me I was a Stage III, and then set up an appointment on Tuesday with himself and two oncologists, one for chemotherapy and one for radiation. He also said that the good news about my MRI is that it showed there is a good margin of healthy tissue around my tumor and that there is no invasion of the anal sphincter complex. This means he can perform surgery without me being subject to a colostomy. He wants me to begin Chemo and Radiation to shrink the tumor, then he will operate. I am a little concerned about the side effects, which I have read are tough, but I am determined to do everything in my power to survive them in the best possible form. Any tips on how to do this would be appreciated. Thanks all!
Thanks for the update. You are in the fight and have to make the best of the situation. That is good news about the margin available for your surgeon. That's what I would call a win and you take those whenever you can. It is common to shrink the tumor prior to surgery. I see that a lot in other cancer journeys. You look to have a good team working with you and that's important. They sound experienced and confident.
Side effects. Yes, there will be side effects. That's a part of "giving ground" when you have to and then taking it back. Good news is you won't get all of them. The common ones are more than likely. I looked at them when I was getting my chemo and focused on some that I wanted to completely avoid. For instance ... nausea. I knocked on the door of nausea. I could feel it coming on. I knew if I couldn't eat to fuel the body, it would make things tougher on me. I would eat small amounts often instead of a big meal. I needed calories so I ate mostly pasta meals. Small amounts 10 - 12 times a day. Take your supplements and side effect meds as well. Hydration is huge. Absolutely. I would 3 - 28 ounce containers and fill them and knew I needed to finish them throughout the day. Seeing them sitting there is a good reminder. Calories. Whatever you can tolerate. For me it was pasta meals and oatmeal. You have to fuel. During chemo, I lost most of the sensation to taste. I could taste spicy so I would take smaller bites of chicken and add some spices to them. I would create my own mixture and carry it with me so if I stopped at a restaurant, I had my spices to help me eat.
Fatigue is another common side effect. If I was tired I would rest. Nothing wrong with that. I would try to maintain my normal routine through out the day. I started chemo and would do my physical fitness / exercises the same day. Then I would give it a day or two after treatment before getting back to it. The key is to keep doing what is important. If you have a daily routine, it may move to an every other day or two days off then back to it. Maintaining a schedule is very therapeutic as it is something you are in control of. You own that. Side effects may delay things, but always try to get back to your routine as soon as you are able.
Diarrhea was a big side effect in my case. There are meds that proved to be helpful, but nothing made it go away. They just made it more manageable. And you learn things on the way such as too much spicy on the foods would prove to be a trigger. It's like having a new norm. You learn what you need to do to make it more manageable. I actually gave it a name .. "Bob". If I felt the need to go, I might say "I need to call Bob, I'll be right back" ... or "Bob just texted me to call him ... I'll be back." Hey, whatever works and makes it more manageable.
We do wish you the best in going through this journey. Please ask questions and keep us up to date.👍 I'm sure a lot of people on this site have side effect stories and how they managed them. This would be applicable with other disease and not just cancer.
I think you have a great attitude and you can beat this. It is winnable and the goal is to become NED (No Evidence of Disease). Keep an eye on that goal and head right at it .💪❤️👏
As always, your comments are uplifting and postitive. I will use your tips, and with the help of others and the Almighty, reach the goal of NED. I will keep you all posted! Again, thanks!
Thank you 12345Marie for the kind words.❤️💪👏🤟 I get encouraged by the other's contributions here as well. It's amazing when you realize you are not the first and you are not alone. Learning from other's experience is huge. We don't ask for dark days, but we need to do whatever it takes to survive them. The journeys may be unique but the goals to survive them are common.
hi there I had this just over a year ago now! I like you thought the worst, within 3 weeks I had an operation to remove the scar tissue from the cancerous polyp ! I had five removed during my colonoscopy, mine was also in the lower part of my rectum, I have now regular blood scans MRI and so on , all news is positive so I’m hoping this will be the case for you , all the very best and keep positive thoughts
Thanks for the comments. It brings me hope. Being positive is a must. I am not positive by nature, but that has to change. I am glad to hear your positive results! Great news!
It will depend what stage it's at. I had a dreadful shock too after my colonoscopy following a negative CT scan - which was inaccurate! Turned out I had Stage 3 sigmoid cancer. Following a colectomy and short chemo treatment (3 months) for the moment I am cancer free! I had my colectomy December 2022. And that followed a partial nephrectomy for kidney cancer (which was quite separate) in July. The delay from symptoms in August to surgery in December, was because the kidney tumour was identified first and so I had to undergo the procedures for that first. The thing is CT scans with dye are not always accurate. A colonoscopy is the gold standard.
I know what you are going through but it is amazing how you will cope once you begin treatment. I feel incredibly lucky at the moment and you may well be too. Our NHS service is patchy but pretty good in my area. I had laparoscopic surgery for the kidney resection and open surgery for the lower anterior resection.
You will face it and you may well be very lucky, I am 76 years old so know what a shock it all is but you are stronger than you know ... .
So sorry to hear of your cancer diagnosis. But while the C word can be extremely scary, these things are fixable these days.
After being cured of HEP C I had a specialist tell me that everyone over 50 should have a colonoscopy. So, she did one and found 4 polyps, two of the kind that can turn into cancer. She told me to come back in 1 year and then just found two little “pimples” she called them and zapped them. Told me to come back in 3 years and found nothing. Then another 5 years- nothing. Then she said 7 years. But in 2017 after about 4 years, I was having trouble going to the bathroom in the morning. Instead of drinking my coffee and having a poop, I was pooping 5 times all morning and they were pencil thin. I Googled and it indicated a possible obstruction. This made sense to me since my Dad, uncle and two cousins had had colon cancer.
The tumour was quite large. Amazing that after having small polyps that I could grow such a large tumour in 4 years. I got a colonoscopy as fast as I could and learned that I had Type 3C colon cancer. I had the tumour removed and got an ileostomy as well as 6 months of chemo. After a year the Ileostomy was reversed. I’ve had a lot of bathroom problems over the years, especially in the first 7 months after the reversal but I’m so glad that I got this in time. I now am to have a colonoscopy every three years although the surgeon told my wife that everyone should have one every two years. With all that colon cancer in the family, my genetic test was negative for the gene. The Oncologist told me that the chance of my cancer returning is approximately Zero. Wow! Talk about music to my ears.
Regarding special diets, I now include salad every day and bran cereal in the morning., I've been drinking 3 tablespoons of psyllium husk after dinner. Over the years I've had accidents where I could make it 20 feet to the bathroom, as well as constipation. I also include a Senokot laxative every night. It's all a pain in the butt but on the bright side I am 65 pounds lighter than I was in 2017 and these bathroom problems have mostly gone away. I'll be 75 later this month and I feel great. On the orders of the Oncologist, I have been walking every night. I have all the usual old man aches and pains, sore shoulder swollen prostate etc. But when I think of all I went through I always think of others I have seen that make my colon cancer experience seem like nothing. When I had my iliostomy bag one of my friends told me he would rather die than live like that. I never missed any of my grandson's hockey games or anything else. Just a slight inconvenience
thanks so much for your sharing. It means a great deal to me, I have been in pretty low spirits. But, Wednesday, I am seeing my surgeon, Thursday, I am getting a CAT scan. I only pray, I have the same opportunity to survive and thrive as you have. Thanks again.
hi there how did your appointment go with your surgeon? and your CAT scan hopefully you have some results back and you are doing well. I’ve got my first year colonoscopy on the 30th April I’m hoping there is nothing there, over a year later I feel in good health with my ongoing checkup, all the best to everyone on this group and thank you for your support.
Dance 22: First, I am praying that your latest colonoscopy turns out well, chances are it will. Secondly: I have had a CT that came back showed no spread; My surgeon, after giving me a signmoidoscopy one month after I had a colonsocopy, ordered a staging MRI, which staged my cancer as Rectal Cancer stage III. My surgeon says there are some positives, in that, there is healthy tissue around my turmor that makes it likely he can get all of the cancer and that there is enough distance between the tumor and my anus. Also, there is good news that there is no cancer in my sphincter muscle. He now wants to shrink the cancer before removing it. I am meeting with him and two ongonologists Tuesday to discuss my Chemo and Radiation treatment. That's my upday; I am trying to be positive and trying to be brave. God Bless.
Thank you for your support and kind words, mine was caught early from my bowel screening last February, it was a polyp one of 5 removed, had a operation to remove the tissue from the cancerous polyp, I’ve had two sigmoidoscopy and the rest of the scans MRI blood work, I feel so lucky that they got it early, all the best to you on your journey take care. I will post when any results come back 🤞👌
That's great news Dance22. Tell your story to whomever will hear it. It is so advantageous to catch things early. Screening is sooooooooo important. I ignored so many signs, but hindsight is 20:20. I'm glad you are doing well and YES, please post your results.👍👏
You are doing exactly what needs to be done. You have a strong team in your corner. Positive and Brave is the way to go. You are in control of that. You got this!!!!
My2Cents ... move the prep timeline up 1-2 hours so you can get a good nights sleep and on the day of the procedure you can focus on the procedure instead of where the nest toilet is. I also add some lime Gatorade to the mix for flavor. I use Suprep or Moviprep.
Hi there it’s two days to go for my colonoscopy, so basically watching what I eat so the prep goes well, thank you for the advice I’ll be taking it well before bedtime, my appointment is in the morning so an early start 🤞 will post my results 🙏🤞
Hi there I’m using Moviprep , I’ve used it before, my appointment is in the morning of Tuesday 30th April, on reading the instructions again I’ll be taking them within four hours of each other so hopefully get a good night sleep.
had my colonoscopy Tuesday, all went well, 3 polyps removed but consultant not concerned about them, they will be tested so hopefully not repeat on last year 👌
CED48 I am in a similar position to yourself. I’ve had a colonoscopy and CT scan a month ago . 5 polyps were removed at the time but a suspicious mass was discovered high up in the bowel. I’m seeing a consultant next week. I’m hoping and praying it hasn’t spread. It’s been helpful reading the posts here and advice given and has given me food for thought re a diagnosis. Thank you.
Sorry to hear about your situation. Thank God you discovered it and now you can do something to cure it.
In my case, in March of this year, I had a colonoscopy and they found a 5-centimeter cancerous tumor at the sigmoid juncture of my colon on the edge of the rectum. It was diagnosed as rectal cancer.
* Then came the tough part: getting a CT Scan, MRI, Petscan, and a Sigmoidoscopy took two months to complete and schedule, which means I did not know where I stood as far as the spread or the stage of my cancer.
The system is backed up, but it could be worse. The cancer was discovered on March 14 and It was staged with a complete treatment plan on May 20.
* Not knowing where you stand and what treatment options you have was the worst of the experience for me.
Soon after the tests, I met with my treatment team at the Sinai Cancer Center in Baltimore, Md., and that's when everything turned around -- because I finally discovered where I stood.
My team consists of a radiation oncologist, a chemo oncologist, and a rectal surgeon.
* My stage was diagnosed as a stage 3 cancer with the possibility of 1 or 2 lymph nodes next to the tumor that could possibly be affected.
BOTTOM LINE: Regional Stage 3 cancer, no spread to other organs.
At my team meeting all three doctors said they were going for the CURE and that it was a reasonable goal.
* The next step was that they laid out my treatment plan as follows:
-- 28 days of radiation treatments
-- 28 days of taking oral cancer pills
_-- 8 FolFox Chemo Treatment
-- Reevaluation of what kind of surgery would be needed to finish the job. * There is a slight possibility the tumor will shrink into nothing, but that only happens about 20 to 30 percent of the time. In my case, because of the size -- it is possible, but not likely. However, my tumor could shrink to the point that the operation is must easier.
* If you watch YouTube tapes about any of these treatment steps, you'll find many of them are negative as some describe the treatments of radiation and chemo as torturous.
MY PROGRESS: I have completed radiation and oral chemo. Today I just finished my 4th FolFox treatment.
The side effects have been minimal for me, mostly causing fatigue for a few days after the treatments. Radiation did cause some alternate constipation and diarrhea, which was easily controlled with over-the-counter medicines.
The symptoms that made me seek a colonoscopy were bleeding and mucus in my stool a noticeable change in the shape of my stool, and a sudden increase in bowel movements.
Today, no more bleeding, and my stool is more normally shaped. My bowel movements are almost normal, and there is no mucus in my stool.
Truthfully, I would not know i have cancer based on my lack of symptoms today.
Also, my blood tests show that the market that indicates cancerous growth has fallen greatly and is almost at a normal range. My oncologists tell me this is a good sign and indicates the tumor is shrinking.
So, that is where I stand now. Honestly, I feel great, but the only negative is that the radiation treatment is a probable cause for a sudden hip problem, which I am now being treated for. Radiation can cause muscle inflammation. If if were not for this, I can say I feel normal.
I have 4 more FolFox treatments to go, at which time I will have to take all of the imaging tests and a colonoscopy, so my team can assess the result of my treatment. Once this is done, I will meet with my surgeon and we will decide what comes next.
TAKEAWAY:
As I said before the testing and waiting for results is the tough part. Be strong, pray if you are a believer, and try to realize that even those who are diagnosed with Stage 4 cancer that has spread to other organs do survive for years and are declared cancer-free
DO NOT LISTEN TO THE VOICE OF YOUR LOWER MOMENTS.
As crazy as it sounds, your cancer diagnosis may be a blessing in disguise. For me, it has been. I no longer waste my time thinking about what could or would have been.
I have forgiven those I think have harmed me, and when possible I make amends to those I have harmed.
I stay away from political and religious arguments. I try and help those in my family and those I come in contact with. My life has taken on a whole new meaning. I realize I am not the center of the universe, and that many people are suffering more than I.
I will pray for your recovery and leave you with this: Do not dispair, but learn to appreciate each day you have and live life to it fullest.
Thank you so much. That all sounds very reassuring. There is a very strong history of Bowel Cancer in my family. My sister had it first in her 40’s and again in her 70’s and has made a good recovery both times which gives me hope. As I’m awaiting results I have only shared my news with my husband and grown up children. My sister is quite private but when I have my results shortly I’m sure we will have a frank discussion. I don’t dwell on what’s ahead but it’s always there in the back of your mind and as you say , having faith is a great comfort. Thank you for offering to pray for me. I’m so fortunate as I have a few other friends of strong faith praying too. I’ll let you know how I stand shortly. God bless
well after seeing the consultant last Tuesday he pushed the boat out and had me in hospital the following Monday with the bowel being resectioned on Tuesday this week!!A shocking speed but brilliant., the keyhole surgery was straightforward and successful, thankfully., I’m coming on well apart from some sickness and wind but getting there. Thank you for your support, I’m hoping to hear from the tests on the lymph nodes in about 6 weeks
hi there I had this 18 months ago, exactly what you’re describing, I had the polyps removed and went in for the removal of scar tissue, and lots of scans MRI blood work, I’m coming up to two years next march, I’m im good health and coming up to my birthday 72 so all the very best for your health 💯
I am happy for you. Thanks. I am into my 6 Fox chemo treatment. I have 3 more to go. Then I go back to my surgeon, who will see how much the tumor has shrunk. We’ll take it from there and set up the operation probably sometime in January.
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FIT and Feacal Calprotectin
Heavy rectal bleeding / with blood clots.
*colonoscopy update*
My colon cancer journey
