Husband just diagnosed update****

Things can be overwhelming, especially when you have no idea of the scope of the disease and the challenges of the future.  All I can say is that you have to take one step at a time.  Even with scopes and scans, you will unlikely know the extent of the disease until surgery.  At that point, some walk away with no further treatment, while others get bad news and face chemotherapy and an uncertain future.  Sorry you are in this circumstance.

I am so sorry that you are now in this group. It's sucks and it's just not fair. We found out Nov 2017 Thanksgiving day. The very first words out of my husbands mouth were "Oh my God, I am going to die". Seeing him in that hospital bed, hearing those words are going to haunt me for the rest of my life. My husband is stage 4, with 30 mets to his liver. There are days I do think things will be okay, but lately he has had a few setbacks which has been a slap in the face. In a strange way, most of the time I try embrace the diagnosis as a wake up call, we are kinder to one another, we cherish each other like we never had before....after all he could have been killed in a wreck driving to work, so we no longer take another moment for granted. The realistic side of me knows that with the amount of a tumor load to his liver....that the miraculous remission probably won't happen but for now as long as he continues with treatment each day is a step closer to a medical break through and that's what keeps me able to function. You are still early in this, you don't know the staging yet and hopefully it is not advanced. My husband never showed the symptoms it was a shock. I had just came home from the hospital myself with pneumonia he started a fever and had some pain when he was taking a deep breath so we went to the ER thinking he needed antibiotics. In a few hours our lives were changed. The doctor came in with that look of doom and just through it out there, colon cancer with over 20 tumors on the liver and he walked out that was the last we saw of him. He was admitted there and then for further testing. What was supposed to be a normal Thanksgiving holiday, turned into the worst roller coaster ride anyone can imagine. 

Whatever stage it does come back at, there is always hope you have to hold onto that and believe that. You too have kids depending on you, so you have to put that smile on your face and still remain that upbeat cheerful Mommy. The 2 month old is way too young, thank God to know what is going on. The older kids. Notify their schools and have them on the look out for any changes in their personalities and work. Our kids are handling it well, but at first they did get into a couple of fights and grades started to slip. The fights were because of cruel heartless bullies that said to them "Your Dad's going to die and you are going to be homeless" Some kids are just rotten to the core! The guidance counselors will go above and beyond to talk to them and they may open up to them more than to you at first. Be as honest as you feel that they can handle but do know they can and will handle it much better than you will give them credit for. You may not need to tell them everything, but once the staging is in and treatment begins, you have to start telling them something. God willing it's early, God willing surgery will get it out and chemo can be avoided. But even with the best case scenario the older kids are going to know something is up. With us, we have been 100% upfront with everything, staging and all. They are 13 though and hard to put anything past. I feel as though it's better to have it out in the open than one day having them hate me because they were not prepared for what lies ahead.  

You husband is so young, as much as your feel like saying it is horrible that he is so young....Its actually a good thing. He's got a lot of strength and stamina in him and will likely tolerate treatment much better now than say 10 or 20 years from now. As far as treatments not knowing what they will be yet let me tell you each patient is very different some will get horribly sick from chemo others won't. So you can cross that bridge when you come to it. In the meantime you have lots of questions and we are here to help you through. I can promise you that the internet as helpful as it is will also drive you even further mad. STAY away from reading the statistics! The statistics are so inaccurate and misleading and will scare the crap out of you! If you have read them, or will read them, know that they are out of date, did not exclude patients with other illnesses and cause of deaths. So much has changed in the years since that was published such as the line of targeted therapies and the gene testing for more effecive cocktails to be put on. 

Honey once again, I am so sorry that you are here. I wish that there was something that I could do or say that would set your mind at ease. Unfortuntley there are no words and no actions that will do that. So my best possible advice to you is to hold onto your faith, love him and appreciate him even more. This is going to be an emotional roller coaster, ups and downs twists and turns and you need to brace for that. You have it in you though to still be that great mom the great wife and that awesome caretaker.....though right now you probably don't feel that way, since it's so new to you. Remember to take care of you too. Keep up with your own doctor appointments, keep up with your eating healthy too and get plenty of rest. Take time to step aside and clear your mind and don't feel guilty about it. You will be good to no one if you are not good to yourself! Hang in there!!! Hugs!!!  

Ebarrera said:

Did you have surgery? Were

Did you have surgery? Were you tired before the chemo? My husband hasnt had any treatment yet as we are waiting on scans. Insurance is dragging their feet. He is always tired... I just wonder if that is normal and does it get better with surgery or chemo?

I can't say. I'd bought a business less than a year before and was so busy with that that I can't say for sure. I was tired but was it from the cancer? I don't know. I've been asked a few times if I wasn't tired. The everything seemed like such a whirlwind. The port, the chemo and radiation, then the surgery. It all seemd very quick. I also had to sell the business and had an employee that wanted to buy it and chose to try to destroy it when I first refused. She'd asked about 4 days after my diagnosis, a little soon. I'd told her I wasn't ready tomake that decision yet and she quit and went on Facebook and was lying about me and the business. It was pretty horrible. And with then trying to sell it I was just too busy.

Sorry, that's not much of an answer.

Take care,

Jan 

I was diagnosed in March 2017.  Stage 3c.  No symptoms.  While up in a Saturday with abdominal pain and a fever.  Thought it was appendicitis.  Monday morning im having surgery ro remove the mass.  Extensive chemo, more surgery and more chemo.  Did have a brief remission.  Im currently being treated with a chemo pill, Xeloda.  More scams in June.  Im able to do most of what i did before.  I walk every day and that helps.  Hope your husband's gets good news.

My husband was diagnosed stage 4 july 2017 at the age of 37. His was found during a colonoscopy and emergency surgery was preformed less than 24 hours after the baseball sized tumor was found. He had one met on the liver. looking back we saw the symptoms, fatigue, weight loss, waking up very pale, diarrhea etc. at the time he always had a reason to justify the symptomS- working too much,

the chicken wings etc. 54 chemos, 30 radiation treatments & 5 surgeries later (3 related to cancer) he is still here and at the moment thriving. He recently had an APR and finally all cancer was said to be removed, he has scans next month to determine if all is still clear. It is an Up and down roller coaster ride. Until they do staging you will not know.we were told stage 2 to start and it ended up being stage 4 a  few days later. I would encourage a second opinion if you are not at a major cancer center. Rich was first told ”chemo for life, howeverl long that may be”. many prayers to your family. Take care of yourself. It’s easy to neglect yourself during this time, but try not to. 

Hi,

I know you're going through a tough time but I wanted to just reach out and let you know my husband's story.

 On February 27th of this year, we took my husband to the hospital bc he had severe constipation. He is 31. We found out he had a bowel obstruction due to a tumor through a CT scan. He had surgery the next day. The tumor was 7 cm long. He had to also have an ileostomy bag which is temporary for now. 

The pathology report came back about 6 days after his surgery and it was confirmed to be cancer. It was staged at 3c but we were told it's a "dangerous" 3c because of the aggressive nature of the cancer as well as because he had 11 of 21 lymph nodes positive for cancer. They did a chest CT scan in the hospital to make sure there weren't any mets to his lungs and thankfully there weren't.

Fast forward to now, he's had 5 sessions of Folfox chemo. He's responded well to the treatment. He hasn't lost his hair and still has an ok appetite. There's a lot that he can't eat because of the ileostomy bag, which is also a huge life change. His blood tests have been good, a few areas related to liver function where the values could be lower but nothing that his oncologist is too concerned about. He had a scan a few days ago so we're hoping it comes back clear.

He will have 7 more sessions and then we're hoping he'll be NED (no evidence of disease). Also, he had a second surgery (outpatient) before his chemo to install a mediport just below his left shoulder. That's where they give him the chemo through.

He has chemo every 2 weeks on a Wednesday. The 5fu is attached to his port from Wednesday to Friday through a little ball that administers the medicine. It's small enough that he puts it in his pocket and a nurse comes by and removes it on Friday. Now from Wednesday through Sunday, he's tired. He sleeps most of the day and sometimes gets a fever, but otherwise he's fine, just tired. Monday, he's an amazing ball of energy of again and the next week goes by smoothly.

My point is, we're coping with this best as we can, one day at a time. It took me a while to get to this point. On an unrelated note, during this whole time, I also had to have surgery for thyroid cancer (no chemo), which added to our stress this whole time. We're lucky that we have an amazing support system in our family. We don't have kids and may never have them (chemo affects sperm), but we've accepted that. But we're getting through this and you and your husband will too. I pray everything goes well for your husband. If you have any additional questions, please feel free to reach out. Thanks.

hmalik said:

Hi,

Hi,

I know you're going through a tough time but I wanted to just reach out and let you know my husband's story.

 On February 27th of this year, we took my husband to the hospital bc he had severe constipation. He is 31. We found out he had a bowel obstruction due to a tumor through a CT scan. He had surgery the next day. The tumor was 7 cm long. He had to also have an ileostomy bag which is temporary for now. 

The pathology report came back about 6 days after his surgery and it was confirmed to be cancer. It was staged at 3c but we were told it's a "dangerous" 3c because of the aggressive nature of the cancer as well as because he had 11 of 21 lymph nodes positive for cancer. They did a chest CT scan in the hospital to make sure there weren't any mets to his lungs and thankfully there weren't.

Fast forward to now, he's had 5 sessions of Folfox chemo. He's responded well to the treatment. He hasn't lost his hair and still has an ok appetite. There's a lot that he can't eat because of the ileostomy bag, which is also a huge life change. His blood tests have been good, a few areas related to liver function where the values could be lower but nothing that his oncologist is too concerned about. He had a scan a few days ago so we're hoping it comes back clear.

He will have 7 more sessions and then we're hoping he'll be NED (no evidence of disease). Also, he had a second surgery (outpatient) before his chemo to install a mediport just below his left shoulder. That's where they give him the chemo through.

He has chemo every 2 weeks on a Wednesday. The 5fu is attached to his port from Wednesday to Friday through a little ball that administers the medicine. It's small enough that he puts it in his pocket and a nurse comes by and removes it on Friday. Now from Wednesday through Sunday, he's tired. He sleeps most of the day and sometimes gets a fever, but otherwise he's fine, just tired. Monday, he's an amazing ball of energy of again and the next week goes by smoothly.

My point is, we're coping with this best as we can, one day at a time. It took me a while to get to this point. On an unrelated note, during this whole time, I also had to have surgery for thyroid cancer (no chemo), which added to our stress this whole time. We're lucky that we have an amazing support system in our family. We don't have kids and may never have them (chemo affects sperm), but we've accepted that. But we're getting through this and you and your husband will too. I pray everything goes well for your husband. If you have any additional questions, please feel free to reach out. Thanks.

I didn’t see anyone comment on whether going on disability is an option with colon cancer. I will say that in my experience I was given assistance applying for ssdi as soon as my short term disability ended and long term kicked in. My employer had this service called Allsup who basically got the ball rolling and assisted with completing forms and accessing the necessary medical records to submit to ssdi. This can be done on your own but I was fortunate to have them help. It was of course so the government would be at least partially responsible for my disability payments and it lessens the burden in the insurance carrier. Anyhow I believe it kicks in if approved at 6 months from the time you were disabled. This is also the amount of time it took to be given a decision In my case. Apparently I was fortunate or unfortunate at being approved quickly and without needing any additional appeals. It seems some cases can take a long time to be approved and I was told point blank most claims are denied then appealed and hopefully approved and is paid retroactively to the 6 months after disability. 

Again I’ll say I had no problems applying for it and being approved and that was no doubt due to my condition and the job I held. If I am able to go back to work after treatment it can be put on hold and reactivated if god forbid I’d need it to be.  

The advantage of going on ssdi ( besides the income it provides)is it stops the clock on your weekly earnings as far as social security. For instance it means that when calculating social security benefits it will not reduce your average pay because the weeks You aren’t getting paid by employer are not included in the average whereas if that clock doesn’t stop it can reduce your average. I hope that makes sense. 

I believe that after 2 years I could in theory go on Medicaid ( or Medicare-not exactly versed in that option as of yet) which is something that could be very important. I’m a year away from that anyway but when it gets closer I’ll hopefully figure out the best option for me. Anyhow the answer is yes there are people on ssdi disability for colon cancer or at least there’s one of us.  

Hoping for the best for you and your husband.

Steelkiwi686 said:

I didn’t see anyone comment on whether going on disability is an option with colon cancer. I will say that in my experience I was given assistance applying for ssdi as soon as my short term disability ended and long term kicked in. My employer had this service called Allsup who basically got the ball rolling and assisted with completing forms and accessing the necessary medical records to submit to ssdi. This can be done on your own but I was fortunate to have them help. It was of course so the government would be at least partially responsible for my disability payments and it lessens the burden in the insurance carrier. Anyhow I believe it kicks in if approved at 6 months from the time you were disabled. This is also the amount of time it took to be given a decision In my case. Apparently I was fortunate or unfortunate at being approved quickly and without needing any additional appeals. It seems some cases can take a long time to be approved and I was told point blank most claims are denied then appealed and hopefully approved and is paid retroactively to the 6 months after disability. 

Again I’ll say I had no problems applying for it and being approved and that was no doubt due to my condition and the job I held. If I am able to go back to work after treatment it can be put on hold and reactivated if god forbid I’d need it to be.  

The advantage of going on ssdi ( besides the income it provides)is it stops the clock on your weekly earnings as far as social security. For instance it means that when calculating social security benefits it will not reduce your average pay because the weeks You aren’t getting paid by employer are not included in the average whereas if that clock doesn’t stop it can reduce your average. I hope that makes sense. 

I believe that after 2 years I could in theory go on Medicaid ( or Medicare-not exactly versed in that option as of yet) which is something that could be very important. I’m a year away from that anyway but when it gets closer I’ll hopefully figure out the best option for me. Anyhow the answer is yes there are people on ssdi disability for colon cancer or at least there’s one of us.  

Hoping for the best for you and your husband.

If he is stage 4 I'm thinking it's automatic for disability but I'd check the government website as there are some restrictions.  Also if you have a Social Security office near you, go in an ask them this question.  But I'd try the suggestion above with that company.  Also, don't ever be disappointed if they deny him the first time as they usually do, that's why it's good to get a lawyer or a company to help you as they've been through this before.  Wishing him luck.

Kim