The Colon Club

Hello, I'm here seeking support, advice, prayers for my son who has colon cancer. He is 46 years old and has a 17 year old daughter. There is no family history of colon cancer and my son has no risk factors. A brief history:

My son began having rectal bleeding, GP referred him to GI Dr for colonoscopy, which took a few months to get in for an appointment despite repeated calls. On colonoscopy a sigmoid mass was found in December, in January had a pre-op MRI, CT from neck to groin--all clear. In January, he had a colon resection. Margins were clear, the tumors was a Stage 3A adenocarcinoma moderately differentiated with one out of 7 lymph nodes +. Had a port implanted.

He began chemo with oxiliplatin, 5-FU and Leucovorin (FOLFOX) on Feb 26, to be given every other week for 12 cycles or 6 months of treatment. April 9 liver functions tests (LFTs) were markedly elevated so the oncologist held the oxiliplation but gave him the other 2, which he gets a bolus of 5-FU then wears the pump for 46 hours. Yesterday at the oncology appointment one LFT was normal the other almost normal so this coming Monday he has the green light for the full chemo regimen. No neuropathy thus far, but he has headaches, cold food/drink intolerance, jaw clenching and a few oral sores, insomnia (early wakening), fatigue and nausea. Dr felt the elevated LFTs were due to Tylenol he was taking for headaches, so she advised Aleve only if absolutely needed...and to report any bleeding.

Oncologist wants to do early surveillance due to his age (?) which would be repeat CEA and CT to be scheduled pretty soon. She's monitoring the LFTs, CBC, renal function every other week.

Needless to say, this has been a tremendous SHOCK to me and my family. The news was stunning and very scary--it still is! My daughter, his sister (age 42), is having her initial colonoscopy today due to the first degree relative recommendation. I pray that it's normal. Oncologist advises my son's daughter should have her first colonoscopy about age 35-36. Oh and genetic testing was negative for cancer. We're awaiting the written report.

He wants the aggressive treatment and is willing to, as he says, "suck it up" the side effects to do so. He goes to work every day, walks 4 miles nearly every day, eats well, especially on his "off" week when he's not so nauseous. Makes green smoothies for breakfast and takes one to work. He takes a multivitamin. He's on no other meds except an occasional Xanax. I worry that he keeps things bottled up inside and encourage him to verbalize. I don't know that he does though. He has a busy and stressful job, is extremely responsible & brings work home often. As he says "It is what it is" (both to work and cancer), and I know the reality of it, but this surely hit out of the blue.

I welcome any and all comments, advice, support and prayers. Thank you if you feel led to respond. I''m sorry if this is too long.


9/2017 rectal bleeding
12/2017 colonoscopy; sigmoid mass found. MRI chest abd pelvis - normal, CEA normal
1/16/2018 colon resection Mod. differentiated Adenocarcinoma T3 N1 MX
1/18 Port implanted
2/26/18 FOLFOX begun

I highly recommend finding an oncology counselor for him to talk to. I firmly believe that we all should be referred when we get diagnosed. Also, if there is a support group available, that will help as well. I attend a GI cancer support group every month at my cancer center. I started going right after I was diagnosed and haven't missed a meeting yet. It helps to be around others who have been there, or are currently going through the same thing. Our support group does break out sessions where the caregivers head to another room. That helps us to talk about things that maybe we don't want our loved ones to hear, and vice versa.

Hi Capri,

I'm sure you have a million thoughts going through your head as a mom. It sounds like your son is doing well with his treatment. There is so much information that it can be overwhelming for patient and family.

This forum offers wonderful support as well as valuable information from fellow members with various stages of CRC. I understand your concerns about your son being stoic and not wanting to talk about how he feels. Everyone deals with the emotional side of cancer in their own way and all you can do is respect his wishes and be there when he eventually is ready to open up.

Welcome to the support group that no one wants to join but the best one out there! My best wishes to your son and your family for successful treatment. Hang in there!

Shana

Aqx99 wrote:I highly recommend finding an oncology counselor for him to talk to. I firmly believe that we all should be referred when we get diagnosed.

Ditto, ditto, ditto. DITTO.

I have avoided giving my parents too much detail because I wanted to protect them. They were already so stressed and I didn't want to add to it by giving them troubling information about which they could do absolutely nothing except worry more. I guess I was protecting me too because it would surely affect my state of mind to hear the fear in their voices. There are dark thoughts I don't even tell my husband or closest friends because I don't want to put this on them ... those are the thoughts I take to the counselor.

The kindest thing my family & friends have done is to call and just talk about what's going on, as if I didn't have cancer. Dad likes to tell me about the latest interesting food or recipe he tried (I love to cook and he seems to be cooking a lot of things I can eat -- I'm pretty sure it's not coincidental) or his latest unusual fix-it solution, and that really lightens my mood. It's just nice to feel normal.

I don't know if what I'm about to write will be helpful or not but my oncologist told me about this article and it helped me, especially the last paragraph:
https://www.nytimes.com/2018/01/26/opinion/sunday/cancer-what-to-say.html

We're here for you.

Shana wrote:Hi Capri,

I'm sure you have a million thoughts going through your head as a mom. It sounds like your son is doing well with his treatment. There is so much information that it can be overwhelming for patient and family.

This forum offers wonderful support as well as valuable information from fellow members with various stages of CRC. I understand your concerns about your son being stoic and not wanting to talk about how he feels. Everyone deals with the emotional side of cancer in their own way and all you can do is respect his wishes and be there when he eventually is ready to open up.

Welcome to the support group that no one wants to join but the best one out there! My best wishes to your son and your family for successful treatment. Hang in there!

Shana

Thank you Shana; I am hanging, some days by a thread, but I am hanging on.

Good news is my daughter's colonoscopy today was perfectly normal, thank God.
My son knows I'm here always for anything and I don't press him, but the nurse and mom that I am would love it if he'd open up and it doesn't have to be with me.

Aqx99 wrote:I highly recommend finding an oncology counselor for him to talk to. I firmly believe that we all should be referred when we get diagnosed. Also, if there is a support group available, that will help as well. I attend a GI cancer support group every month at my cancer center. I started going right after I was diagnosed and haven't missed a meeting yet. It helps to be around others who have been there, or are currently going through the same thing. Our support group does break out sessions where the caregivers head to another room. That helps us to talk about things that maybe we don't want our loved ones to hear, and vice versa.

Your group sounds wonderful Aqx99; I did mention a church-run support group to my son but he is not interested, at least not yet.

zephyr wrote:

Aqx99 wrote:I highly recommend finding an oncology counselor for him to talk to. I firmly believe that we all should be referred when we get diagnosed.

Ditto, ditto, ditto. DITTO.

I have avoided giving my parents too much detail because I wanted to protect them. They were already so stressed and I didn't want to add to it by giving them troubling information about which they could do absolutely nothing except worry more. I guess I was protecting me too because it would surely affect my state of mind to hear the fear in their voices. There are dark thoughts I don't even tell my husband or closest friends because I don't want to put this on them ... those are the thoughts I take to the counselor.

The kindest thing my family & friends have done is to call and just talk about what's going on, as if I didn't have cancer. Dad likes to tell me about the latest interesting food or recipe he tried (I love to cook and he seems to be cooking a lot of things I can eat -- I'm pretty sure it's not coincidental) or his latest unusual fix-it solution, and that really lightens my mood. It's just nice to feel normal.

I don't know if what I'm about to write will be helpful or not but my oncologist told me about this article and it helped me, especially the last paragraph:
https://www.nytimes.com/2018/01/26/opinion/sunday/cancer-what-to-say.html

We're here for you.

Thank you, zephyr! I was the last one to learn of my son's Dx, I think it was his way to protect me.

As of now, he has no interest in a support group.

Thanks for sharing the link for the article--excellent!

Hang in there mom. Trust your son. For me going forward with my life is one of the best things I can do. I continue to say "cancer can only have this much" I show about an inch of space between my fingers. Living life normally despite all that is going on is important and bolsters the will to fight.
S

Hi there! I am 47 and was diagnosed last Mar. I went in for a colonoscoy due to finding blood in my stool. I basically have done the same treatment as your son, and just finished Wed. The only difference is I also had radiation. Having a support system is crucial. My husband was and still is a rock star. I am a teacher and due to my close circle of friends I have been nothing but positive and able to go through the process the best I could. I had neuropathy in my hands a little bit. As I progressed it went into my feet (MINOR), just awkward, but didnt prevent me from doing anything. The biggest side effect for me is peeling on my feet. It is a big journey, not one I was planning on, however, I am here to tell you, you will get through it. Its a challenge, but I have learned a lot and so will you and your son. Just one step at a time.............If you ever have questions feel free to private message me.

Hi Capri,

I was diagnosed at age 44 and had a similar diagnosis to your son. Males are a bit different to us females and tend to just get on with things, my husband is like this anyway. I was paralysed with fear at times and the best thing for me was feeling "normal" and doing "normal" things. I think that he is doing well. You have brought up a resilient son who you should be very proud of. Just let him know that you are always there for him to talk with, scream with....anything. It felt surreal when I was diagnosed and hard to believe. I was diagnosed in 2009 and sometimes it feels like yesterday. The anxiety and fear was overwhelming at times especially for the first few years. He is lucky to have such a supportive mother. This website helped me a lot as there was always someone here who understood what I was going through and could help with my concerns and questions. Best wishes xx

Thank you very much MKC70.

I was diagnosed at 47 with rectal cancer and have completed treatment (fingers crossed). Your son is very lucky to have such a caring mom in his corner! I would follow his lead with regards to talking about his treatment and cancer. I HATED it when people would try and force me to talk about it. I did see a counselor but it isn’t for everyone. Your son is dealing with it the way that works best for him. There isn’t a right way. Sounds like he knows you are there for him and really that is what is important! Great news about your daughter’s colonoscopy!

michelle c wrote:Hi Capri,

I was diagnosed at age 44 and had a similar diagnosis to your son. Males are a bit different to us females and tend to just get on with things, my husband is like this anyway. I was paralysed with fear at times and the best thing for me was feeling "normal" and doing "normal" things. I think that he is doing well. You have brought up a resilient son who you should be very proud of. Just let him know that you are always there for him to talk with, scream with....anything. It felt surreal when I was diagnosed and hard to believe. I was diagnosed in 2009 and sometimes it feels like yesterday. The anxiety and fear was overwhelming at times especially for the first few years. He is lucky to have such a supportive mother. This website helped me a lot as there was always someone here who understood what I was going through and could help with my concerns and questions. Best wishes xx

Thank you Michelle; much appreciated.

Your son sounds like me though a lot younger. My treatment chemo + radiation, surgery and then Xeloda+Oxaliplatin for six months. I have another two months to go and the chemo makes me feel pretty crappy. But I'm working five+ days a week as well with a lot of other responsibilities. I would guess that my mother has had a lot of concerns similar to yours.

I try to explain things to those that ask (coworkers, friends, family) in a matter-of-fact way as a lot of people are quite uncomfortable talking about cancer with others and I try to put them at ease.

One thing that helps is talking with others going through the same thing and there are lots of such folks here. Your son might be on the private side but maybe he'd be okay with posting on a forum like this one. He might find some benefit in helping others with their journey as well.

There's a ton of emotional stuff that you go through, no matter how strong you are, and sometimes a close friend to chat helps. I hope that he has such people in his life.

NHMike wrote:
There's a ton of emotional stuff that you go through, no matter how strong you are, and sometimes a close friend to chat helps. I hope that he has such people in his life.

Capri,

I definitely agree with Mike. My family has been supportive but sometimes I feel like my cancer is such a black cloud hanging over everyone. I'm Stage IV so I know that things can change at any time.. a bad scan... current chemo stops working etc.

I have a couple of close friends who are able to listen to my concerns without making me feel like I am burdening them. I tend to protect my family more while I am feeling well because I don't want them to worry and I know there's nothing they can do anyway. My dad is 94 years old and sharp as a tack so I just tell him that chemo is my new career lol.

We each find our own path and there are often detours along the way. As hard as this has been for me, it would be a thousand times worse if it were one of my kids! You're an wonderful mother for seeking support for yourself and on behalf of your son. So glad that your daughter's scope was clear!

All the best,
Shana