Where do I go from here-34 year old son diagnosed with rectal cancer.

Posted by myboysthree @myboysthree, 1 day ago

My son was just diagnosed with stage three rectal cancer from an Oncologist here in Iowa. As their treatment plans are limited I want to get him to Mayo sooner than later for a second opinion. However I am not sure he is ready to do that yet. I feel the ultimate decision is up to him but I fear the longer we wait the greater the risk of it spreading.
Any suggestions?

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Suggest you call Mayo as soon as you can because there may be a waiting. Of 3 to 4 months before you can't be seen

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I had stage 3B anal cancer at 40. I was treated at Roswell Park in Buffalo I had the Nigro protocol treatment. I’ve been well for 20 years. I beg you to get him treated right away. Mine had spread to my lymph nodes in the right and left side of my stomach. Your son can survive this!

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@myboysthree

I would recommend your son starts the process to request an appointment at Mayo Rochester. If he decides to continue treatment in Iowa, that is OK, but at least if he contacts Mayo, he is starting process if he decides to seek a 2nd opinion. Often Mayo specialist can work with local providers to develop a treatment plan.

He can self-refer or ask his provider to refer him.
The process starts here: http://mayocl.in/1mtmR63

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@roch

@myboysthree

I would recommend your son starts the process to request an appointment at Mayo Rochester. If he decides to continue treatment in Iowa, that is OK, but at least if he contacts Mayo, he is starting process if he decides to seek a 2nd opinion. Often Mayo specialist can work with local providers to develop a treatment plan.

He can self-refer or ask his provider to refer him.
The process starts here: http://mayocl.in/1mtmR63

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Thanks Laurie. Spoke with him earlier today and he has already filled out the appointment request. Just waiting to hear back from someone at Mayo.

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@cfairer

I had stage 3B anal cancer at 40. I was treated at Roswell Park in Buffalo I had the Nigro protocol treatment. I’ve been well for 20 years. I beg you to get him treated right away. Mine had spread to my lymph nodes in the right and left side of my stomach. Your son can survive this!

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We are on it. Just received the diagnosis on Wednesday. He filled out the form to request an appointment at Mayo this morning. Keeping my fingers crossed that he can be seen sooner rather than later.
Thanks for your words of encouragement ❤️

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@cfairer

I had stage 3B anal cancer at 40. I was treated at Roswell Park in Buffalo I had the Nigro protocol treatment. I’ve been well for 20 years. I beg you to get him treated right away. Mine had spread to my lymph nodes in the right and left side of my stomach. Your son can survive this!

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May I ask if you had to have an colostomy bag? He was told that he would have to which is his biggest fear. He is a Chiropractor and owns his own business and is struggling to understand what the impact will be on his life, especially at his young age 😢

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@myboysthree

May I ask if you had to have an colostomy bag? He was told that he would have to which is his biggest fear. He is a Chiropractor and owns his own business and is struggling to understand what the impact will be on his life, especially at his young age 😢

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Hello! I'm a stage 3a rectal cancer survivor.

Diagnosed two years ago at age 50 at my screening colonoscopy. I had a lower anterior resection and 6 months of chemotherapy. No ostomy needed due to the location of the tumor. I happened to also be an oncology nurse (left that career in 2019). My original treatment was done at the major hospital system in Atlanta where I used to work. Since finishing chemo in August 2023, I have gotten second opinions at Vanderbilt Univ and at Mayo -- Jacksonville. I've had three surgeries (well, really 4 but 2 were combined). Two at Northside in Atlanta, one at Mayo. I continue my ongoing surveillance split between Northside (labs every 3 months) and scans at Mayo (now graduated to every 6 months). All this background is just to give you a sense of my path through this.

Now the advice for your son -- ask him to check out a wonderful organization called COLONTOWN. I volunteer for them now as they made such a difference for me. My Mayo doctors are well aware of this org and think highly of it. It manages three main ways of support. First, more than 100 private, invite only FB groups split by diagnosis, stage, interest, etc. This includes at least one group for "ostomates". It is amazing the knowledge and excellent advice you will find in these groups. They also have groups for caregivers as well. Second, COLONTOWN University, a website that takes you through all the latest science-based information from a patient perspective. Finally, DocTalks, a portal of dozens of approx. hour-long presentations by the top doctors in the country in various areas around the CRC (colorectal cancer) space. COLONTOWN employs a science director, who is also a survivor, and she is on top of making sure only accurate and proven information and advice circulate within COLONTOWN.

I think your son will find a lot of people of his age range and situation in CT. It helps so much to talk to people who understand where you are coming from. I wish you both the best on this journey. - Michele

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@mlvangil

Hello! I'm a stage 3a rectal cancer survivor.

Diagnosed two years ago at age 50 at my screening colonoscopy. I had a lower anterior resection and 6 months of chemotherapy. No ostomy needed due to the location of the tumor. I happened to also be an oncology nurse (left that career in 2019). My original treatment was done at the major hospital system in Atlanta where I used to work. Since finishing chemo in August 2023, I have gotten second opinions at Vanderbilt Univ and at Mayo -- Jacksonville. I've had three surgeries (well, really 4 but 2 were combined). Two at Northside in Atlanta, one at Mayo. I continue my ongoing surveillance split between Northside (labs every 3 months) and scans at Mayo (now graduated to every 6 months). All this background is just to give you a sense of my path through this.

Now the advice for your son -- ask him to check out a wonderful organization called COLONTOWN. I volunteer for them now as they made such a difference for me. My Mayo doctors are well aware of this org and think highly of it. It manages three main ways of support. First, more than 100 private, invite only FB groups split by diagnosis, stage, interest, etc. This includes at least one group for "ostomates". It is amazing the knowledge and excellent advice you will find in these groups. They also have groups for caregivers as well. Second, COLONTOWN University, a website that takes you through all the latest science-based information from a patient perspective. Finally, DocTalks, a portal of dozens of approx. hour-long presentations by the top doctors in the country in various areas around the CRC (colorectal cancer) space. COLONTOWN employs a science director, who is also a survivor, and she is on top of making sure only accurate and proven information and advice circulate within COLONTOWN.

I think your son will find a lot of people of his age range and situation in CT. It helps so much to talk to people who understand where you are coming from. I wish you both the best on this journey. - Michele

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Oh -- and one more thing. The ostomy is a change for people at first, but I have friends who run marathons and swim with them so they are not the barrier it may seem. Some people with CRC will have an ostomy during treatment that can be reversed post treatment.

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