Husband diagnosed with cancer right after baby was born

[Katie9791]

My husband is 25 years old. His radiation doctor said that with his symptoms, screenings, and biopsy that he most likely has stage 4 colon cancer. He has a tumor on his sacrum and lesions on his liver. He also has issues going to the bathroom. He can’t hold a steady stream and his stools are very wide. We originally thought it was a pinched nerve since that’s what the doctor from the emergency room said at the beginning.

Our baby is 11 weeks old and he hasn’t been able to hold him since he was maybe 2 weeks old due to being in pain. I’ve been taking care of our baby with the help of my mom. The tumor on his sacrum is causing him to have excruciating pain. He’s currently on numerous pain medications and has been sleeping on the couch for a couple months because it hurts for him to lay in bed.

My husband finished radiation last Thursday. He had a colonoscopy and endoscopy but there were no new findings. He had his blood sent out to look for anything in his genes but that came back with nothing as well. The radiation doctor said that he thinks his immune system fought off the original site of cancer, and that the stronger cells traveled to his liver and sacrum.

His Oncologist diagnosed him with CUP (Cancer of unknown primary). We’re expecting to start chemo on Monday, or before depending on how fast the drugs come in.Should we get a second opinion or just start chemo since it’s very aggressive? His Oncologist contacted a Doctor at Memorial Sloan Kettering Cancer Center in New York since she specializes in CUP and he said that she suggested the same Chemo drugs as him.

We have no idea what we’re doing and just want the best possible outcome. I’m not worried about money, I just want my husband to be healthy.


I don’t want him to die. We’ve been together 10 years and just had our first wedding anniversary on January 7. I’m petrified. I want our baby boy to have his daddy and I don’t want to lose my husband. He’s everything to me and I hate seeing him in pain like this. I never thought this would’ve happened. We planned on having a big family and growing old together.

I’m basically venting and asking for any advice, please. I don’t know what to do. 

[Katekat]

Hi @Katie9791,

Welcome to the community and thanks for sharing some of yours and your husband's story, what a difficult time you've had! We have a great booklet on CUP that I think will help, you can download that here in a handy pdf.

It can never hurt to get a second opinion, especially if there are too many unanswered questions but also perhaps talk frankly with the oncologist, lay it all out there.  This list of questions to ask your doctor may be helpful. This podcast on making treatment decisions may assist you with your decision-making as well.

When caring for someone with cancer, it's important to look after yourself as well as the person with cancer. This podcast on cancer affecting the carer too would be worth listening to. Another booklet worth giving a read is Emotions and Cancer.

We have another podcast about managing cancer pain that may help with some practical strategies with managing acute and/or chronic pain your husband is experiencing.

Does anyone else have any advice for Katie?

-Kate

Online Community Manager

[little_stitcher]

Hi Katie, I'm so sorry your family is going through this.  My husband was diagnosed with stage 4 Follicular Lymphoma in 2011, so I understand a bit of what you are going through.  The only advice I can really give you is buckle up!  This will be one of the most traumatic and exhausting experiences you will have, so make sure to keep yourself in good condition as much as possible.  Don't listen to anyone who creates stress in your life or disrespectfully questions your decisions, keep your supporters close and don't be afraid of leaving people behind if they drag you down.  This time is about you and your family.  And don't be afraid to say yes if people ask if there is anything they can do.  Maybe even keep a little list of jobs that need doing, and if someone offers to help give them a job that would be appropriate.  Often people want to make things better but don't know how to- by asking them to drive someone somewhere or take care of a load of washing you are enabling them to make your lives a little bit better. 

And keep in touch!  This forum is a great place to come when you need support.  I wish you happy moments each day, love and hugs, Emily

[Katie9791]

Thank you for your replies. I appreciate the helpful advice. My husband got results back from a place in California who examined the genes of his liver biopsy. His report came back saying that it is 90% likely that his primary is cholangiocarcinoma, or bile duct cancer. Originally, I thought it was good news because we finally know the primary so we can treat it better. His calcium levels were high, so we were escorted into a different room for him to receive an IV to help with that. His doctor didn’t explain how horrible this particular cancer was. I researched it while sitting by my husband’s side and I started crying after reading the survival rates and symptoms of end of life. He has those symptoms... jaundice, abdominal pain, back pain, fatigue, personality changes, and his feet are extremely swollen. He asked what was wrong and I said nothing, since I could barely talk and didn’t want to scare him. I don’t even think he’s researched this cancer yet. I don’t think he understands the severity of all of this. I don’t want to bring him to that dark side. All his doctor said was that we would start a new combination of drugs for his chemo treatment. He didn’t explain any particular plan or any other options. We don’t even know when we’re supposed to go back to the office. That was yesterday. Today, out of frustration and lack of answers, I contacted my insurance company and MD Anderson in Texas. Our insurance covers treatment there. We just have to wait to hear back from the insurance department at MD Anderson, in order to set an appointment. His next chemo date with the new drugs is February 18. The man on the phone said that they’ll try to get back to us as soon as possible but if we don’t hear back before he starts chemo again, then we’ll have to wait until he’s done. I’m still more scared than I’ve ever been in my life. I just hope that some how he makes it. I don’t know how bad his cancer is. They haven’t done any screenings since he was first diagnosed with cancer in early November. All I know is what the internet has told me. I hope that MD Anderson will give us some answers and a plan to tackle this. I need him. Our baby needs him.