A Brother's Heartfelt Plea: Seeking Guidance and Support for Metastatic Colon Cancer Journey

CancerWarrior_23

Dear CSN Community,

I hope this message finds you well. I am reaching out to CSN community on behalf of my brother, who has been diagnosed with metastatic colon cancer. We are seeking advice or insights from those who have experienced a similar journey, either personally or through their loved ones.

Patient Background:

Age: 36

Sex: Male

No prior chronic medical illnesses

Symptoms: Anorexia, weight loss (over 10 kg), rectal bleeding mixed with stool

Medical History:

Colonoscopy: Sigmoid mass detected 20 cm from the anal verge

Histopathology: Moderately differentiated adenocarcinoma of the sigmoid colon

Imaging: CT and MRI scans revealed extensive hepatic metastases and suspicious lung nodules

Staging: T2/3, N1, M1

Treatment Plan:

Genetic testing for KRAS and MSI

Palliative chemotherapy: FOLFOX + bevacizumab, followed by evaluation

As we navigate this challenging time, we would greatly appreciate any advice, insights, or personal experiences that you may have to offer. Specifically, we are interested in the following:

How did you or your loved one cope with the emotional and physical challenges of metastatic colon cancer and its treatment?

What side effects did you or your loved one experience during treatment, and how were they managed?

Were there any complementary therapies or lifestyle changes that helped during the treatment?

How did you navigate discussions with the healthcare team, and what questions did you find most important to ask?

Are there any resources, such as informative websites, that you found particularly helpful during your journey?

We understand that every individual's experience is unique, but hearing your stories will help us better prepare for the challenges ahead and make informed decisions about my brother's care. Thank you in advance for your support and for taking the time to read and respond to our inquiry.

Sincerely,

CancerWarrior_23

cgsagrillo

Hi! I’m so sorry to hear about your brother but I can say you’ve come to the right place for encouragement and guidance. I’ve read many stories of people on this forum who have been diagnosed years ago who have been living a good life. Many of the statistics we read online are old and do not reflect the current treatments. There is hope.

My 41-year old husband was diagnosed in Dec 2021 as Stage IV, with a 20cm mass very close to the anal verge and some mets to the liver. However, one of the radiologists thought the mets were in fact benign hemangiomas, which was later confirmed through surgery, so he was bumped to Stage II (that’s why I think it’s important to always get second opinions - we spent almost a year thinking there were metastasis when there were not, and he was scheduled for a liver surgery before the tumor removal one).

He was prescribed 25 days of radiotherapy, along with oral chemo (Xeloda). He felt mostly fine, almost no side effects. Followed by 6 cycles of Folfoxiri (also he felt mostly fine). Then surgery - which ended up being brutal, at least the first 3 or 4 months (he had a general infection, which didn’t help). Then 6 more chemos, this time Folfox, where he only felt unwell for the last 2 or so, due to the cumulative effects of the medicine…

And now we wait.

I hope your brother can go through everything just as smoothly as my husband, but everyone seems to react differently to chemo. With him being young and healthy, the psychological part will probably be harder than the physical struggles. Tell him to hang in there - once the hardest moments are behind him, he will look back in disbelief! Life can get back to normal, for both him and his loved ones who are probably worried right now.

If you have any specific questions, please don’t hesitate to ask! All the best to you,

carolina

CancerWarrior_23

https://csn.cancer.org/discussion/comment/1704880#Comment_1704880

Hi carolina,

Thank you so much for sharing your husband's story and the encouragement. I'm glad to hear that your husband has gone through the treatment process and is now waiting for the results. Your experience has given me hope and a better understanding of what my brother might go through.

I have a few questions related to your husband's treatment:

How did you decide on the treatment plan, and were there any alternative options you considered?

During the treatment process, were there any specific side effects management strategies that you found particularly helpful?

How did you manage the communication with your healthcare team, and do you have any recommendations for staying informed and involved in decision-making?

Thank you so much

SandiaBuddy

CW_23. That is a challenging list of questions. I am just passing through here quickly this evening, but will try to give at least a brief reply:

How did you or your loved one cope with the emotional and physical challenges of metastatic colon cancer and its treatment?

Journaling, meditation, long walks and drinking beer helped me.

What side effects did you or your loved one experience during treatment, and how were they managed?

Ugh. Chemo really can be challenging. Probably searching old posts for the specific chemo regime would be the best bet to get an overview. In my view, the people who experience it give much more complete information and practical tips than the doctors do.

Were there any complementary therapies or lifestyle changes that helped during the treatment?

There are a ton of strategies that help. To me, having an optimal vitamin d level and exercising regularly were probably the most important. But there are endless steps one can take. Once again, a search of old posts might be helpful.

How did you navigate discussions with the healthcare team, and what questions did you find most important to ask?

I always went into the meetings with a pad full of questions. The phrase "you have to be your own advocate" has great resonance on this forum, and most of us have experienced the truth of the saying. It also helps to be informed of the issues, in my experience doctors do not go into great depth unless pushed. Do they offer vitamin d testing? Do they discuss the pill versus port for chemo? Do they talk about adjusting chemo doses? Do they talk in full about likely and potential side effects? Researching the heck out of the issues before you meet with the doctors can make the visits most productive, from my perspective.

Are there any resources, such as informative websites, that you found particularly helpful during your journey?

I found pubmed indispensable. PubMed (nih.gov)

CancerWarrior_23

https://csn.cancer.org/discussion/comment/1704907#Comment_1704907

Hey Sandiabuddy,

Thanks for sharing your experience with metastatic colon cancer and its treatment. Your advice on being proactive, asking questions, and researching before meeting doctors is really helpful.

It's cool to know that vitamin D and exercise were important for you. I'll share this with my brother and think about trying these strategies too.

I'll also check out PubMed for research,

Thanks again for your tips, and I wish you all the best!

Take care,