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Colorectal Cancer- Intro and Support

Re: Colorectal Cancer- Intro and Support

Posted by Cynthia Mac on Sep 17, 2020 9:19 am

khein99‍ , Have you talked to your doctors about your concerns about the nerves in your tailbone? 

I had many surgeries in that area when I was a teen, the last of which left some long-term numbness. I’m not sure those nerves ever reconnected, but to be honest, I’m also unsure whether there was any need for that to happen. If I can inject some humour here, I’m not too concerned about the amount dexterity I need in that area!

Definitely, though, talk to your medical team. My surgeon (the last one, who finally fixed the problem for good), told me up front that there could be some nerve damage.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Colorectal Cancer- Intro and Support

Posted by Cherbear on Sep 20, 2020 5:03 pm

Hi Everyone. I was diagnosed with Stage 4 Colon Cancer Dec 2018.  Had surgery Feb 3, 2019 to remove 50% of my colon.  Found out in March 2019 that it had spread to my liver and lungs. Mostly in my lungs.  My Oncologist told me a had a year without chemo and 2 years with chemo. Started Folfiri April 6, 2019. That worked till about March 2020. Then I found out that it wasn’t working and I had to switch to Folfox. Had 6 treatments then a CT scan. Showed no change and just made me feel so awful. After discussions with my Oncologist May 28 was my last treatment.   He said I had about a year before the cancer itself would start to make me sick.   Then I would prob start feeling it in my lungs.  So I have been living like each day is a day closer to my death. I have a 19 year old an 18 year old and a 25 year old daughter. I am devastated!!!!  My anxiety is so so bad. Can’t get control of it.   I wish I didn’t know how long I have. I can’t seem to get past this.  I joined this group for support. I am really hoping I can somehow get past this. 

Re: Colorectal Cancer- Intro and Support

Posted by Essjay on Sep 20, 2020 8:55 pm

Cherbear‍ I’m sorry to read of your stage 4 status and what’s happened with your treatment this year. Knowing your end date is approaching is hard to live with, especially when you have young adults just launching themselves into the world.

I can only try to imagine what you are going through. Do you have support from the psychosocial team, or a palliative care team? They are there for you and your family to help you navigate the ups and downs and the different needs you may have at this stage in your journey. It sounds like you could do with some help to manage your anxiety just now, whether it’s talk therapy ( and it can be so helpful to talk to non family members about your worries about them), or medications to take the edge off your symptoms or to help you sleep. Have you talked to your team about your anxiety? For me I know that when I feel my anxiety overwhelming me, I need to do take action. That can be as simple as making an appointment with a therapist. Knowing I’m doing something to deal with it calms me a bit.

How are your children coping?

best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Colorectal Cancer- Intro and Support

Posted by Cherbear on Sep 20, 2020 9:37 pm

My kids seem to be doing pretty well. We check in with them all the time.  When I was on chemo it was hard for them.   Now that I am off of chemo I am up and spending quality time with them and feeling pretty good.  My Oncologist says that it will be about a year before the cancer starts to take over. They see me doing well so they aren’t thinking sad thoughts.  So I’m grateful for that. 

Re: Colorectal Cancer- Intro and Support

Posted by Lacey_Moderator on Sep 21, 2020 11:45 am

Cherbear‍ 

I'm glad you reached out. Thank you for trusting us with your feelings. Connecting with others who are going through something similar can be so helpful. I'd like to connect you with Boby1511‍. 

We have a great book Advanced Cancer that you can download or read online here:https://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/32043-1-NO.pdf. It has some really good information about moving forward. Also a palliative care team for emotional support is so important. Do you have a palliative care team? 

You may also want to join our Living with Advanced cancer group here: https://cancerconnection.ca/groups/home/75.

For additional help finding support give our Cancer Information Helpline a call at 1-888-939-3333. They are so knowledgeable and understanding.

Feel free to continue to reach out to us here,
Lacey

Re: Colorectal Cancer- Intro and Support

Posted by moplanb on Sep 22, 2020 8:43 am

Hi everyone, this is my first post,

I was recently diagnosed with stage IV colorectal cancer. I had my first appointment with my oncologist yesterday, to discuss  the possible course of treatment/goals. 

A quick backstory of my diagnoses:
First indication that something was amiss was on July 12th. Contacted my GP on the 13th.Was referred to a gastroenterologist and waited for my virtual appointment. After speaking with him on the phone, he scheduled a colonoscopy. Immediately after the procedure I was told I had a sizeable tumor which was likely cancerous and would require emergency surgery. While waiting for my appointment with the surgeon, I was sent for a CT scan and an ultrasound. I saw the surgeon on September 8th, when he informed me that surgery was not an option as my cancer had metastasized to my lymph nodes and liver. He then said he would refer me to an oncologist and chemo would be the only treatment suitable at this time.

Wow! Could this be really happening? I had absolutely no indication that anything was wrong prior to August 12th!

Yesterday, I finally saw the oncologist. She spent a fair bit of time discussing the treatment plan with me, and I immediately felt comfortable with her. She seemed to think that surgery might be a possibility for my liver, or ablation , if not. She seemed very proactive, aggressive (in a good way) and optimistic. She is hoping to have a port inserted from the start (she did mention that this was going to be a very lengthy/ongoing process), but said that I might have a temporary tube in my arm if that doesn't happen quickly enough.
She wants an MRI of my liver done to run it by the surgeons specializing in this, but indicated that chemo would begin regardless. I expect to start my treatment within the next two weeks.

This has happened so very quickly, and there is just so much information to digest. I  continue to remain optimistic and hopeful.

In the meantime, I will spend as much time as I am able, reading the posts here and trying to gather information. I may not post much at this time, until I get my bearings, as it were.

I wish you all the very best, and thank you all for sharing your journey.

mo

Re: Colorectal Cancer- Intro and Support

Posted by Whitelilies on Sep 22, 2020 12:03 pm

moplanb‍ Hello and welcome to our caring site....filled with people who listen, offer suggestions and simply "have been there too".
You have a lot on your plate.....YES stay positive, and this oncologist sounds skilled and kind and caring.  Write down any questions you may have, at your next virtual appt.
The appointments will be coming! Get your dance card ready! It will fill up !
When you have "free time" (lol !!), that is the time to 'do stuff'.....clean the house....vacuum, get your mind OFF things....stock up the pantry....think ahead.....Covid may around....get your canned goods now.....buy masks now....get the car tuned up now....etc......AND care for yourself......try to walk...Fall Colours are HERE....the leaves are falling and crunchy! stomp stomp stomp!
I too am on this journey.  GI dr found 3 cm "down town", on my FIRST colonoscopy.  I had NO CLUE, dr can "see" it?? Dr took 3 polaroid shots in COLOR, and advised me to TAKE these photos with me, and hand over to oncologist! (Shall I put them in a photo album too? make titles: My Caboose !!   grrrrr)
I too had CT scans....MRIs.....another colonoscopy.
My treatment was radiation, 2 surgeries, and now heal.
All treatment plans are different and made to measure, so to speak, for each patient.

Share with us, we all care....when you catch your breath......if you have a concern, there are many folks who can respond and guide.

Stay Positive.

Warmly

Whitelilies

Lillian 

Re: Colorectal Cancer- Intro and Support

Posted by Lacey_Moderator on Sep 22, 2020 12:26 pm

Welcome moplanb‍ 

 A lot has happened these last few months. I'm glad you broke the ice and wrote your first post. This is a safe place to vent, ask questions, share, and connect. 

I'm so glad to hear that you have confidence in your Oncologist. She does sound very proactive and like you're in good hands. I'm glad to hear she was also optimistic about treatments available to you. Each diagnosis is different even when it's the same stage, there are many factors that come into play. 

I'd like to connect you with Michelle_MB‍, Marigold‍, JoTry‍, Danielle518‍, Pinto‍, Cherbear‍ who have experience with stage 4 colon cancer themselves or as a caregiver. Can you guys share a bit about your diagnosis and treatment?

You can post here with or without your bearings. We are here to help you navigate through this. 😊

Do you have support at home?

Lacey

Re: Colorectal Cancer- Intro and Support

Posted by Boby1511 on Sep 22, 2020 2:21 pm

moplanb‍ 

Hi there, just reaching out. I am sending you best wishes.

Re: Colorectal Cancer- Intro and Support

Posted by moplanb on Sep 22, 2020 3:01 pm

Whitelilies‍ 

Hi Lillian,

Thank you for your response! I have been keeping busy, organizing and going through old papers, photographs and clothing. I have managed to declutter a lot of unnecessary stuff! Was already well prepared with masks, nitrile gloves and sanitizer before the quarantine even began. I am a full-time caregiver for my Dad (who recently turned 90), so that keeps me going.

My oncologist's office already called me this morning for a follow up appointment and am waiting for a call for my MRI. The oncologist also wants to send me for an echo prior to starting my chemo.

In the meantime, I have been reading as much as I am able (before my brain starts to hurt) and trying to prepare myself (mentally) for what is yet to come.

Thank you for your support,
mo


 

Re: Colorectal Cancer- Intro and Support

Posted by moplanb on Sep 22, 2020 3:11 pm

Lacey,

Hi and thanks for your post. As I mentioned in my previous entry to Whitelilies, I am a full-time caregiver for my Dad (who is 90 years old). My Dad lives with my husband and me, so that leaves my husband as soon to be "caregiver's assistant" (he'll take over what I am unable to manage) as well as caring for me. Fortunately my husband has a very good friend who has already begun supporting him, which , I believe, is every bit as important as support for me.  His sister also has colorectal cancer and has been undergoing chemo and has had surgery, although her cancer is not as advanced as mine, he still has a very good understanding of what this entails. 

I am feeling overwhelmed at all of the information being given to me! I will do my best to navigate this road, armed with as much information and support as is available to me.

Thanks again,
mo

Re: Colorectal Cancer- Intro and Support

Posted by moplanb on Sep 22, 2020 3:13 pm

Hi Boby1511,

Thank you for thinking of me.

mo

Re: Colorectal Cancer- Intro and Support

Posted by Whitelilies on Sep 22, 2020 5:38 pm

moplanb‍ Hello (again)
Just wanted to share....to make you feel LESS alone.....my dad is turning 90 too! He and my mom, live nearby, but I do visit daily. I do understand the Caregiver-Role....intense and needed and 24 7 at times.
My dad was diagnosed, also, with Colon Cancer (as I)....about 6 months after me. (I am 58). My oncologist insisted to take him, too, as his patient.
My dad, then refused any treatment plans....he said "Leave Me Alone; I am 89 !".
Then, my oncologist urged me to get Genetic Testing......I did......all clear. (did not sleep for 83 nights.....zzzzzz......waiting for stressful results that can impact family and loved ones)
I am glad your husband is able to help and that he TOO has a special friend, for support and more, who truly gets it!

Stay strong.......keep posting....

Lillian

Re: Colorectal Cancer- Intro and Support

Posted by Michelle_MB on Sep 25, 2020 8:25 am

Thank you for the link, Lacey_Moderator!

Hi moplanb‍,

My husband was diagnosed with stage 4 colon cancer in February 2019. He was 47 at that time. Since then, he had 3 surgeries and many rounds of chemotherapy.

To be honest, we are still struggling with this new life: Instead of planning for the future, we are aiming for an uneventful day today. Sometimes we forgot about this and it would lead to sleepless nights with 
despair. 

In addition to this wonderful forum, I also joined a few Facebook groups, e.g. '
TRUE NORTH CREW- A Local COLONTOWN Support Group' (for Canadians with colon cancer) and 'Liver Mets from CRC'. From this group and the Facebook groups, I met many people with similar experiences and some of them are doing very well. This gives me hope - one day we will be ok.

You are at the beginning of a long journey. One day at a time knowing you have our support and best wishes.

Take care,

Michelle

Re: Colorectal Cancer- Intro and Support

Posted by Skye1717 on Sep 27, 2020 1:18 pm

Hi, for those who are doing chemo treatments for colon cancer, can you still work or do most of you take time off work?  My oncologist said most people can continue to work but I'm a little skeptical and don't know how chemo is going to react to me. 

Skye