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Looking for a little hope

Looking for a little hope

Posted by akuip061 on Feb 17, 2020 9:06 am

Hello,

My dad was diagnosed with oral squamous cell carcinoma in 2017. He had a tumour on his tongue. He underwent surgery for it (and neglected to tell me or my sisters about it until the night before surgery). They also removed some lymphnods at that time to check for cancer, but it hadn't spread at that point. He was considered clear.

Then, in spring of 2019, there was a tumour in his thyroid. He underwent surgery, as well as radiation (6 weeks), and 3 rounds of chemo. He was done with treatment in the beginning of July. In October, he had another thorough scan and no cancer was detected. 

He started to feel unwell around Christmas. We assumed it was radiation side effects still (fibrosis) because he has been getting checked so frequently. A little over a week ago, we got confirmation that he had cancer in his neck again. He also underwent another scan. We then learned it has metastasized to his spine and lung. The day after the scan, he started to have trouble breathing. He underwent surgery and now has a trachea. Currently, he is waiting for a GI tube to be put in as well. He is at Sunnybrooke. They have started radiation for the lung and spine tumours. He will get 6 rounds of radiation, which started on Saturday, then chemo. Immunotherapy was talked about, but this was before we learned it has metastasized, although we believe that is still the plan for treatment.

My dad is seeing this diagnosis of stage 4c as an imminent death sentence. I did too when I first learned it had metastasized, but I'm feeling more hopeful the more I read about it. I'm hoping to find a little hope to give him, to get his spirits up. He's only 56 and all his blood work is coming back good. He's strong and is a healthy weight. I know he wont be cured, but we want to believe he will have more time with us. I just had a baby in July, his first grandchild. I want them to have more time together.

Any stories or encouragement would be greatly appreciated. Thanks
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Re: Looking for a little hope

Posted by ACH2015 on Feb 17, 2020 10:10 am

Hi akuip061‍ 

There are many of us here that have been diagnosed with Stage IV cancer - me included. My experience began in June of 2016 at diagnosis. Initially I was told I had 3 - 6 months to live, so I guess that oncologist was wrong, because I'm still here!

Your father like many of us here wasn't diagnosed until the later stages of cancer. This can certainly be more challenging, scary, require intensive or aggressive treatments and extended recovery time frames. I can't tell you or your father that he is curable, but currently he is treatable. When my 2nd opinion oncologist said I was not curable - but treatable, it changed my attitude and gave me hope to move forward with. I had a recurrence in 2017 that resulted in multiple additional treatments, and that is scary Just like it is for your father to believe his cancer was removed only to find out it has metastasized and is now stage IV.

Advanced Cancer and Questions to ask when you have cancer are two publications that helped me (and still do) get through rough patches, and help frame questions to ask at consults, as well as the importance of keeping track of records and consults.

I am one of many here that are still walking and talking after a Stage IV cancer diagnosis, so please use this as you will to provide hope and a different perspective to your father. I am sure others here will gladly share their experiences with you and your father as I have.

Congratulations on your first child, and your fathers first grandchild. Fitting to share with you today, given that this is Family Day in Ontario.

Happy Family Day. Please keep in touch and share this with your father.

ACH2015

Re: Looking for a little hope

Posted by Wendy Tea on Feb 17, 2020 10:16 am

akuip061‍  The picture of your little guy is so adorable! I am sorry your dad has another diagnosis to deal with and that this is so concerning. I was really scared when they said cancer but I knew I was in good hands and together we would work towards a positive outcome.  Your dad is in great hands and they will do everything possible to help him.
I lost my mother before my son was born (he is 37 now) so I understand your pain. What you can do for you son is to live for today. Make memories with your dad, record them, and enjoy being together. Wouldn't it be fun to watch a video of your son with your dad at your son's 10th birthday with your dad sitting next to you sharing in the fun? Take it one day at a time. Best wishes to you all and please stay in touch. 
Healing takes time and opportunity. Wendy Tea

Re: Looking for a little hope

Posted by CentralAB on Feb 18, 2020 6:48 am

akuip061:
Hello,

My dad was diagnosed with oral squamous cell carcinoma in 2017. He had a tumour on his tongue. He underwent surgery for it (and neglected to tell me or my sisters about it until the night before surgery). They also removed some lymphnods at that time to check for cancer, but it hadn't spread at that point. He was considered clear.

Then, in spring of 2019, there was a tumour in his thyroid. He underwent surgery, as well as radiation (6 weeks), and 3 rounds of chemo. He was done with treatment in the beginning of July. In October, he had another thorough scan and no cancer was detected. 

He started to feel unwell around Christmas. We assumed it was radiation side effects still (fibrosis) because he has been getting checked so frequently. A little over a week ago, we got confirmation that he had cancer in his neck again. He also underwent another scan. We then learned it has metastasized to his spine and lung. The day after the scan, he started to have trouble breathing. He underwent surgery and now has a trachea. Currently, he is waiting for a GI tube to be put in as well. He is at Sunnybrooke. They have started radiation for the lung and spine tumours. He will get 6 rounds of radiation, which started on Saturday, then chemo. Immunotherapy was talked about, but this was before we learned it has metastasized, although we believe that is still the plan for treatment.

My dad is seeing this diagnosis of stage 4c as an imminent death sentence. I did too when I first learned it had metastasized, but I'm feeling more hopeful the more I read about it. I'm hoping to find a little hope to give him, to get his spirits up. He's only 56 and all his blood work is coming back good. He's strong and is a healthy weight. I know he wont be cured, but we want to believe he will have more time with us. I just had a baby in July, his first grandchild. I want them to have more time together.

Any stories or encouragement would be greatly appreciated. Thanks
​​​​​​
​​

Hello @akuip061  It sounds like you have already had some battles with cancer and battling it with your loved one. Maybe that will already be one small island of praise there?  I found that by knowing most of whats going on and going to happen, it makes the current battle just a little easier. I can appreciate your ideas re your Dad living longer to see the grandchild more. Sometimes the simplest things in our lives can be the most meaningful.

I am looking after my wife with cancer. This is her third bout. Years ago, and several times over the years, doctors or ER nurses have called her "terminal."  Although she does not have much longer as I write this; the thing Id like people to know is that the cancer doesnt have to be allowed to define us and how we live. After 5 years of being "terminal" my wife and I have had some of the absolute best years of our lives. We simply didnt let "terminal" control that. Say what you mean; mean what you say to each other. All the rest will follow in kind. :)
________________ "there is always a little Light"

Re: Looking for a little hope

Posted by Lacey_adminCCS on Jun 16, 2020 11:41 am

akuip061‍ 

Just checking in. How is your dad doing?

I hope to hear from you,
Lacey

Re: Looking for a little hope

Posted by yorky123 on Jun 17, 2020 9:05 am

Prayers help me, each and every day.  I will pray for your Dad,  I wish him a Happy Father's Day.
Lynn