Just Diagnosed : Hi, went to the... - Colon Cancer Conn...

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Just Diagnosed

Kint profile image
Kint
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Hi, went to the doctors about a month ago after I noticed a blood clot in my morning movement. Had a positive FIT test then a colonoscopy which found a large polyp (2.5cm ish) in my rectum they took a sample and sent it for tests.

I got the call this week that the sample was not benign and I need to have a CT scan to see what stage and if any other organs are impacted.

Feeling a bit lost and everything is a little unreal. Everything has happened so fast. If anyone has any advice on what to expect next I would appreciate it.

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Kint
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GCCA-Survivor profile image
GCCA-SurvivorAdministrator

Hi Kint,

Thank you for posting on Colon Cancer Connected. I've been in your shoes. I like your situation better than mine. I am a cancer survivor. I didn't have many symptoms like blood in a stool. I had some tender abdominal pain. I was sent for a CT scan to check it out. Then I had my first colonoscopy and was diagnosed with stage 4 colon cancer. Not a polyp, but a baseball sized tumor. I had surgery to remove the tumor and a 4 1/2 year fight. I failed to get answers early. I had genetic testing and found I had a hereditary form of cancer and my family had to get tested as well.

Back to you ... You are doing great. I am proud of you as you are getting answers early. That is key. I hate you have to wait so long for your results. Please know you are way ahead and doing all you can do to get answers. You are probably in for some surgery to remove that polyp. They are trying to see if there is anything else going on with this so an action plan can be developed and see if anything else needs to be looked at. You have to stay strong. Be the best patient you can be.

Is there a family history? You should get genetic testing so you can find your biomarkers. This would be beneficial to determine future surveillance so you continue to find things early. You have something that is malignant. You'll need some screenings. It can also be very helpful information for your family!!!! It may say something about certain family member getting some testing as well to see if they should go on some kind of surveillance.

I know is does happen very quickly. You get that feeling you are not in control of things. You aren't. One thing you can control is your attitude, strength, hydration, nutrition, and faith. Control what you are in control of. Stay positive. You are all over this early. Please feel good about that aspect of the situation.

You also need good doctors. It looks like you have done that. That's very important because one thing I realized is I didn't know how to fight cancer. I had good doctors as well.

We do wish you the very best as you go through this journey. I am so proud of you getting this information early. Please let us know what you find out as that can be helpful to others on this site as well.

All the best to you Kint,

~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.

Kint profile image
Kint in reply to GCCA-Survivor

Hey Tom, thanks for taking the time to reply, reading your advice and story on this forum has been really helpful.

No family history of cancer, my lifestyle has not been the healthiest and was expecting a bit of a wake call at some point but this one is a doozy.

Had my CT scan today full torso so now is the anxious wait for the next phase and finding out which stage it’s at.

I am not sure if this is normal/healthy but I have not told my family about it yet, whilst so little is know I don’t want to worry them and I know my ‘normal’ is likely to evaporate soon so want to hold on to it as long as I can.

GCCA-Survivor profile image
GCCA-SurvivorAdministrator in reply to Kint

Hey Kint,

Hope that CT scan comes back with great news for you. Know this ... you'll be getting needed information and you're getting it early. It's best to know. You've caught it in a polyp stage. And no family history is great also. If you've got kids, you may want to get genetic testing to see if what you have may be hereditary. If it's not hereditary, great. If it is, then the kids may have to be tested to see if they need some kind of surveillance. It is so good to catch things early. Maybe a discussion with your doctor about that would be good.

I totally understand about hanging on to your 'normal'. It's ok to get all the information so they won't worry and have some anxiety about it. It is true your 'normal' will change. To what degree is a question. At the very least you will probably be placed on some kind of surveillance and that's perfectly ok. It's best to know.

My 'normal' went out the window the day after my first CT scan that found my tumor. I never got it back. My oncologist told me "you know, that tumor we took out of you in 2012 was a polyp in 2006." I didn't catch things early. Totally my bad.

All the best in getting great news from your CT. Let us know👍🤟

Redicy10 profile image
Redicy10 in reply to GCCA-Survivor

hi tom/kint ..... i had a similar issue as kint. i had trace blood in my stool (diarrhea) thought it was hemorrhoids because of a small bump at tip of my rectum. went to doctor had a colonoscopy done, had a ct scan, pet scan was told by the doctor i lit" up like a Christmas tree and was told had a tumor size of grapefruit. doctor started chemo and radiation to shrink the tumor (this was about 1 1/2 years ( 2016) later surgery to remove my colon . i have been on a bag since 2016 . if i could help please let tom know . would like to be assistance to anyone.

respectifully phil

Txbj1 profile image
Txbj1

Hi Kint.

I’m so sorry about the findings. I’ve been there was well but my tumor was located at my sigmoid colon. Did my scans all clear except for the tumor. Had my LAR surgery in October. 5/21 lymph nodes tested positive for carcinoma. My port was placed 2 weeks ago. Chemo starts next weds 12 cycles for 6mos. My stage, b3.

Stay strong and positive. Write down every question. When you meet with drs you will remember what to asked. When you feel down, it’s ok but don’t stay in that emotion. Pick yourself up and tel yourself that you got this!

Study as much as your can so that you can be well informed when you have your appointments. It’s helped me!

Chin up!! You can do it!! 💕💕🎈

Kint profile image
Kint in reply to Txbj1

Thank you Txbj1 hearing about your experience will be useful. I have to say when I got the call the doctor must have thought I was odd as I thanked him for their time, but was just a bit shocked and not sure what else to ask as it seemed the scans will be the key phase now.

Kint profile image
Kint

Update:

I had a call from the nurse to explain next steps and timing whilst on the phone the results of the CT scan arrived and it was the best news possible, no signs of any other tumours or spread so at this time it seems to be contained into the single polyp observed in the colonoscopy.

Next steps is for surgery to remove the polyp and to take some lymph nodes for testing to see if chemo is required.

It’s amazing how many additional symptoms your mind generates whilst you are in the process of gathering the facts around your condition, as since I’ve had this call most of my additional pain/cramping etc has gone away.

To anyone reading this who notices blood or any other symptom I urge you to go to your Doctor asap don’t delay don’t put it off the bleeding may come and go (mine was a single spot then nothing for a month) but it’s best to find out and although it spikes the anxiety 9/10 it’s not cancer but if it is then the earlier you catch it the better.

I will continue to update as I work through this.

Kint profile image
Kint

I am now booked in for my operation on the 29th December. Met the surgeon today who explained they will be removing part of my Sigmoid colon he said it’s 50/50 if I’ll have a stoma bag fitted. After the surgery they will analyse the removed colon and surrounding lymph nodes to assess if I will need further treatment Chemo etc.

fingers crossed it stays as a stage 2!

Nicole_GCCA profile image
Nicole_GCCAPartner in reply to Kint

Thank you for the update, Kint , please keep us updated if you can. Please let us know if you are interested in being connected with additional online support groups or local resources.

Kint profile image
Kint in reply to Nicole_GCCA

Hi Nicole, I will keep this updated and would be interested in hearing about other groups/forms of support.

Nicole_GCCA profile image
Nicole_GCCAPartner in reply to Kint

Hi Kint

Here's two groups I recommend - when you connect please let them know that GCCA (or Global Colon Cancer Association) is how you heard about them. As non profits it is always helpful to know how patients are hearing about our services, so both groups will appreciate knowing how you got to them :)

These are both international groups that you can connect on the internet with - but if you want to private message GCCA-Survivor or me with your location we can also connect you with any patient advocacy groups in your area.

Man Up To Cancer (manuptocancer.com/) was created for men affected by cancer and the people who love them. They are an incredible group.

Colontown has a number of neighborhood groups that are specific, and again, it is an incredible group. (colontown.org/).

You will be in great hands with both of these groups.

We hope you'll keep us updated as well :)

Kint profile image
Kint

Next step complete!

After a bit of a road bump where a bad dose of flu delayed my surgery, I finally had my procedure last Wednesday.

I was so nervous but the team were brilliant at reassuring me and after six and a half hours surgery I was brought round with my sigmoid colon removed and a bit of my rectum taken for good measure too.

The surgeon managed to do the whole procedure via keyhole and was comfortable with the resection join that they decided not to fit a stoma. Now after 5 days recuperating in the hospital I am back home.

Now comes a good couple of months of a low fibre/residue diet whilst getting to know my rebooted bowel.

Meanwhile the former part of me has been sent for review, once complete I’ll know if there is further cancer treatment required or not.

GCCA-Survivor profile image
GCCA-SurvivorAdministrator in reply to Kint

It's good to see that you had your procedure and you're back at home. I know when I had my partial colectomy it was definitely a little while before I got to know my “rebooted bowl”. I had some other things going on at the same time like chemo treatments, so some of the times I didn't know if it was the surgery or side effects from treatment.

I do hope that you're good to go and recovery is all you need to do. Sounds like you had an excellent medical team and they got what they needed to get. I'm thinking no further cancer treatment required. Do let us know when you get the good word back from pathology. 👍👏

Kint profile image
Kint

Today the results of the biopsy on my removed colon, lymph nodes and blood vessels came back and I feel blessed to say the tumour was confirmed as stage 2 and the 26 lymph nodes and blood vessels were all clear of cancer! So at this time no further treatment is required and I can simply concentrate on a recovery from my surgery.

I have mentioned before but will stress again the importance of following up on any concerns you have, I see lots of posts here asking for advice but from my journey one of the things that became clear is there is no cookie cutter version of this disease everyone is different and the only way to be sure is to get tested.

Feels weird to say I have been lucky after having a foot of my bowel removed due to cancer but I truly feel that way.

in reply to Kint

Hope you’re doing well? Did your doctor at the time of your colonoscopy say your polyp looked concerning? I had a 2cm polyp removed last week and my doctor told me he wasn’t concerned with it at all. I’m still so nervous waiting on the biopsy results. Was your doctor able to remove your polyp during the colonoscopy?

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