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Feeling lost after father’s stage 4 colon cancer diagnosis

Posted by nancyd823 @nancyd823, 2 days ago

Just got news yesterday that my 63 year old father has stage 4 colon cancer, after two and half months of pretty pedestrian digestive problems. This is such a shock because he’s been quite healthy.

So far, we’ve just been told that it’s stage 4, there’s some spread in the bowel and there is a mass in his lower colon. We are waiting on blood test to find out if he can tolerate chemo and a chest CT scan to check for spread.

I’m so new to this, no one in my family has had cancer. My parents are also immigrants, so it’s on me to make sure I advocate for them properly. I have so little information right now, just would appreciate any tips and guidance on how I should proceed.

Thank you all so much in advance.

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nancyd823 | @nancyd823 | 1 day ago
In reply to @nycmusic "First, I am sorry for your father’s diagnosis….stage 4 means that the cancer has spread and..." + (show)
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First, I am sorry for your father’s diagnosis….stage 4 means that the cancer has spread and is in the lymph nodes, and requires systemic treatment …your post doesn’t say what tests have been done that would clearly indicate stage 4….at the beginning of my cancer journey, i still had many tests and imaging ahead and they said I had a large aggressive tumor, T4—I wrongly assumed I was stage 4–only my tumor was a 4 ! The beginning is hard, when info is far from complete…. Your father is blessed to have you by his side….wishing you both the best.

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@nycmusic Thank you very much for your kind words!

I wish you all the best in your journey.

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nancyd823 | @nancyd823 | 1 day ago
In reply to @celia16 "I don’t have any information about this condition, but I do wish you and father well..." + (show)
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I don’t have any information about this condition, but I do wish you and father well as he begins treatment. It must be quite a shock. I hope you’ll get some options that will help.

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@celia16 Thank you very much for your kind words!

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nancyd823 | @nancyd823 | 1 day ago
In reply to @joanmorrison "I understand how you must feel at this time. I had a three days of severe..." + (show)
Profile picture for joanmorrison @joanmorrison

I understand how you must feel at this time. I had a three days of severe constipation in last May (which cleared up on its own). I had already made an appointment to see my doctor and even though things had cleared up I kept the appointment. He booked me for a colonoscopy. The results showed a large growth I had surgery to remove it. The surgeon also removed 20 lymph nodes. Turned out that that the tumour and 5 lymph nodes were cancerous. I had 12 rounds of Folfix over 6 months. I am cancer free. I am being monitored with regular colonoscopies.

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@joanmorrison Thank you very much for sharing your personal experience! It is so scary how this disease just shows up seemingly out of the blue.

I see that you mentioned you were cared for at PMH, which is the top cancer hospital around. What was the process that you went through to request being treated at PMH? My Dad is at a regional hospital because it wasn't clear what his diagnosis was until two days ago and I'm trying my hardest to get him seen at cancer specialized institutions.

I wish you all the best in your journey.

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frouke | @frouke | 1 day ago
In reply to @nancyd823 "@celia16 Thank you very much for your kind words!" + (show)
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@celia16 Thank you very much for your kind words!

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@nancyd823 The family doctor that I was with referred me to the UHN in 2019.

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nancyd823 | @nancyd823 | 1 day ago
In reply to @frouke "@nancyd823 The family doctor that I was with referred me to the UHN in 2019." + (show)
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@nancyd823 The family doctor that I was with referred me to the UHN in 2019.

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@frouke Thank you for the quick reply!

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josk | @josk | 1 day ago
In reply to @nancyd823 "@josk Thank you very much for chiming in! It's great to hear that you are being..." + (show)
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@josk Thank you very much for chiming in! It's great to hear that you are being given great care at PMCC, even to someone who's new to this they are known as a top cancer hospital.

I'm wondering how you got to be seen at PMCC? Did you start your care there or got referred there by your care team/family doctor? My Dad is currently being seen at a regional hospital that is not well regarded for their cancer care and I'm desperately trying to line up getting him seen at specialized institutions.

I wish you all the best in your journey.

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@nancyd823
In my case - nasopharyngeal cancer - i.e. cancer at the back of nose - my family doctor referred me to a doctor in Toronto General Hospital (part of the UHN network) who did tests and when diagnosed with nasopharyngeal cancer, I was referred to PMCC, UHN.
Since your dad is lung cancer - perhaps you may want to check if your doctor can refer your dad to the appropriate doctor in PMCC for tests / treatment.
Best wishes !!!

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nycmusic | @nycmusic | 1 day ago
In reply to @nancyd823 "@nycmusic Thank you very much for your kind words! I wish you all the best in..." + (show)
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@nycmusic Thank you very much for your kind words!

I wish you all the best in your journey.

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@nancyd823 thank you. Will keep your father in my prayers.

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joanmorrison | @joanmorrison | 1 day ago
In reply to @nancyd823 "@frouke Thank you very much for chiming in! I will be sure to include Toronto General..." + (show)
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@frouke Thank you very much for chiming in!

I will be sure to include Toronto General in the list of institutions that I try to get him seen at. How were you able to get seen there? Did you start from there or got referred there? My Dad is currently at a regional hospital and I'm trying to get him seen at a specialized one.

I wish you all the best in your journey.

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@nancyd823
Once I was diagnosed I spoke to my oncologist and requested that I receive treatment at Princess Margaret Hospital.

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josk | @josk | 18 hours ago
In reply to @josk "@nancyd823 In my case - nasopharyngeal cancer - i.e. cancer at the back of nose -..." + (show)
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@nancyd823
In my case - nasopharyngeal cancer - i.e. cancer at the back of nose - my family doctor referred me to a doctor in Toronto General Hospital (part of the UHN network) who did tests and when diagnosed with nasopharyngeal cancer, I was referred to PMCC, UHN.
Since your dad is lung cancer - perhaps you may want to check if your doctor can refer your dad to the appropriate doctor in PMCC for tests / treatment.
Best wishes !!!

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@josk ... oops ... sorry!! -- should read colon cancer (as opposed to lung cancer).

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nancyd823 | @nancyd823 | 16 hours ago
In reply to @josk "@josk ... oops ... sorry!! -- should read colon cancer (as opposed to lung cancer)." + (show)
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@josk ... oops ... sorry!! -- should read colon cancer (as opposed to lung cancer).

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@josk no problem! 😆

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