My colon cancer journey

[Martin50]

Hi everyone

I was diagnosed with colon cancer 1st week of March this year. I have always had hemorrhoids so blood in my stool was never a concern. However, in Dec last year I noticed I was going to the loo too many times, alot of blood and narrow stools. I still didnt think much of it.

In Jan I got an anal abscess. It was the most painful experience of my life. It was drained and I healed quite quickly. A fistula developed in Feb. A fistulotomy was performed. I was dicharged and went home to heal. About 2 weeks later, a doctor from the hospital called telling me to urgently go see him. I was away with my family on holiday. I told him the earliest I could see him was 4 days later. I didnt think much of it. I thought he was calling to check on my progress after surgery .

Well, 4 days later I was back to see him. He then told me that as part of protocol, any tissue they remove is taken to the lab for biopsy and unfortuntely cancer cells were spotted in my sample. I was shocked! He told me they tested 3 different times and the outcome was the same. They were equally surprised as I am only 39 yrs and quite healthy and a gym freak.

I was immediaty booked for an MRI. Results showed a mass in the colon. A chest CT scan showed some small lung nodules. I did a colonoscopy plus biopsy which showed where the cancer was located. To rule out lung metastasis, a CT guided biopsy was done on the largest lung nodule. The result was -ve for malignancy.

I begun treatment in April. 25 sessions of chemo (xeloda 3300mg a day) plus radiotherapy. It went quite well until the 18 session when major fatigue kicked in. Also, my skin around the anus peeled off causing alot of pain. My fistula also started acting up by discharging alot of weird colored mucus. I was told it was the result of radiotherapy.

Anyway I completed treatment and am now awaiting surgery to remove the tumor. I did my blood work plus CT and MRI scans this week. Am to see my oncologist next week. Am very apprehensive as I dont know what to expect. Am particularly worried about the lung nodules. I just hope they were right when they said they were not malignant. I guess the chest CT will show this

[WthrMtsfan712]

Thanks for sharing your story. And good luck heading forward. I really, really hope that everything will work out for you.

[kmd026]

I hope you get the results you want so you can feel better

[Wintersbite]

Hi don't worry about it when you meet your consultant I found my team was very nice you said that your 39yrs so am I and I'm in my last year free for my 2nd lot I was 34&35 when I got my cancer diagnosis and I found my team really helped me understand and get driven to beat this thay even helped me out with having to do the blood tests ( I'm a big chicken when it comes to needles so my chemotherapy was big pills like I said I am a chicken) .

If you ever want to talk to someone who is same age and has gone through Colon Cancer you can feel free to give me a message.

Good luck

[Honey456]

Wow thank you for sharing this

I wish you all the best for the future

❤️

[Wexford1968]

I have just recovered from bowel cancer so I know what your going through,it is one of the easiest cancers to cure,don’t let it get you down I’m sure everything thing will work out well for you, I am cancer free now and hopefully it will be the same for you you have a long road ahead but they have fantastic treatments now and I will pray for your complete recovery, jerry

[32malewithcolitis in reply to Wexford1968]

How long do they think yours has been in your body until it was found?

[Cesrsf in reply to Wexford1968]

Please can I ask you this, which stage of Bowel cancer were you diagnosed and what was your treatment plan?

[Martin50 in reply to Cesrsf]

Staging of the tumour was done after it was removed. 3 out of 26 lymph nodes were positive. Its thus a stage 2 cancer.

I am scheduled for 6 sessions of adjuvant chemo. I also had chemo and radiotherapy before the operation

[Nicole_GCCA Partner]

Hello Martin50,

Thank you for sharing and I'm sorry to hear about your diagnosis and all that you've been through. I hope you will find support here in this group.

Did you have biomarker testing done on your tumor? If so, do you know if there are any genetic mutations that were identified? Personalized medicine is really advancing, particularly in colorectal cancer, and depending on any mutations in your tumor, specific treatments may be available. We have a website, knowyourbiomarker.org that has more information about this topic.

Please keep in touch on your treatment - we're here for you.

[Itslaterthanyouthink]

This is an anxious time for you. I hope all goes well on the rest of your journey.

[lovetao]

Thank you so much for sharing your story. This one goes out to the rest of the thread. I’ve been experiencing blood in stool on and off and stomach pai for around 2 and half weeks. Did any of you have stomach pain leading up to your diagnosis. Cramping all over my stomach but mainly on right side and on/under my rib cage. My doctor has done two blood tests which both show that I’m not anemic. The second blood test also confirmed there was no inflammation. Should this give me confidence that it’s not colon cancer? Worth pointing out that I had a colonoscopy 5 years that was normal.

Many thanks for any help you guys can provide. This is such an amazing forum. Full of so many brave people willing to share their experiences to help others - that’s the definition of selfless ... much respect, love and power to you all. Keep strong and upbeat.

[mondlee6248 in reply to lovetao]

Actually I have blood in stool on and off as well, did you tell your doc and what did the doc say regarding the on off blood in stool?

[Martin50 in reply to lovetao]

I did not experience any stomach pain. Blood in stool could be caused by several issues. Its good to have that investigated

[Martin50]

Just an update. The lung nodules have been ruled out as cancerous and that is the good news. The bad is that a biopsy was done on the fistula track and its positive for cancer.

Frankly am devastated as I had hoped all along that I wont need a permanent stoma. The surgeon says its the only option. I am awaiting a second and third opinion before I proceed with this life changing decision

[Nicole_GCCA Partner in reply to Martin50]

I'm sorry to hear about this. I think it is a great idea to get a 2nd or even a 3rd opinion. Please keep us updated, we're here for you.

[HappyG0 in reply to Martin50]

So sorry to hear and thank you for sharing. Please keep us updated and praying that all ends well.

[Nicole_GCCA Partner]

Hi Martin50, I'm reachig out to see how you are doing and if you went forward with the stoma? Please let us know how you are - we are here for you.

~Nicole @ GCCA

[Martin50 in reply to Nicole_GCCA]

Hi Nicole. I sought 4 different opinions and they all said the same thing. I thus has had the operation on 29th July. I now have a permanent stoma. Its not been easy adjusting to a new way of life. Frankly I just dont like my life right now.

The operation was over 7 hours. I was on a catheter for almost 3 weeks as I could not pass urine no matter how much I tried. Thankfully am now able to do so. My erections completely disappeared. Surgeon says its likely due to nerve injury and is hopeful I will recover. I was however not satisfied with that feedback so am seeing a urologist at a different hospital.

I am still in pain over 6 weeks later. The pain is from the anal wound as its not completely healed. Sitting down is a problem and so is driving.

I just feel that this cancer has taken too much from me and its just not fair. Am only 39. But since I have 3 kids, I guess I have no choice but to fight for their sake

[Nicole_GCCA Partner in reply to Martin50]

Dear Martin50, Thanks for replying and I'm so sorry for all that you are going through. I can't speak from personal experience but have seen many many people come to peace with having a permanent stoma. But as I understand it, it takes time. It's hard when it feels like your body is working against you and I do hope that you are able to find relief and find moments of joy, if not now, at some point in the future.

Have you had any luck with any types of pillows for sitting/driving? Are there any topical creams that are allowed (I'm guessing not if it is an open wound healing but maybe worth asking if something with lidocaine to numb the pain is allowed?)

That's great that you are able to urinate now and have had the catheter removed. I know it can be hard to celebrate wins when you have so many challenges you are facing in front of you.

Absolutely seek out another urologist. I'm sure it is really frustrating.

I'm not sure where in the world you are located, but there are a number of groups where people who have ostomy's connect. I know many people who have benefited from being able to share tips and frustration.

Here's an international group - but if you let me know what country you are in, I can look for some resources for you. ostomyinternational.org/

I also see there is a community on this website as well: healthunlocked.com/colostom...

Please keep us updated and know that we are here for you. Hoping that you find some relief.

~Nicole @ GCCA

[Jaymendoza0288]

How long were you bleeding for and having narrow stools before you were diagnosed?