Are you serious?????

[husbandswarrior]

I apologize for the length of my first post and thank you to all who take the time to read it in its entirety. My husband has had Crohn's Disease for the last 20 years. Last September, he was admitted to the hospital for what we thought was an obstruction due to the chronic inflammation. When the doctor came out of surgery, he pulled me into the "family room" and informed me that my 45-year-old husband was found to have cancer in his small intestines. I sat there and looked at the doctor and my first words that came out of my mouth were "you have got to be shitting me". Very eloquent I know. I literally felt like someone had punched me in the chest and had their hand around my heart. The doctor then rambled on and on about believing that he was able to resect all of it. I sorry but he had lost me at cancer. Prior to the surgery, I should add, my husband had a CT scan that showed what appeared to be cysts in his liver. The surgeon told me that he did not see any visible evidence of lymph node spread or spread to the visible portion of the liver. We anxiously awaited for the biopsy results to come in, which did in fact confirm that he had small bowel cancer; however, there was no spread to the resected lymph nodes. As I am sure that most of you know small bowel cancer is in fact very rare, but they do treat it like they would colorectal cancer. The surgeon really did not want to pursue any sort of treatment right away due to my husband's malnourished and weak state. I asked him about the CT scan that should these "liver cysts" and was told "lets get him healthy", and then we can address that. In November of 2014, we had seen an oncologist in Pittsburgh. He reviewed all the information and informed us that he was going to speak to a couple of his colleagues and see what the best way to proceed would be. Again, there is no set protocol for small bowel cancer. Keep in mind, he did have the records of the CT scan. The oncologist did email me and stated that he thought it would be best to proceed with a round of chemotherapy as an extra layer of precaution, but we could set this up with our local cancer center. After seeing a local oncologist, he also agreed with starting my husband on chemotherapy but wanted to repeat his CT scan. Hmmm....ok. I don't question as to why or if he is concerned about the so called cysts in his liver. I receive a call while I am at work right after Thanksgiving stating that the previously seen areas in his liver have now grown, and they would like a PET scan. I get home from work that night and explain this to my husband, who as always takes things in stride and states that he will do what he needs to do. PET scan came back lighting up in the area of the aforementioned liver cysts. Again, a conversation I had to explain to my husband and now we proceed with liver biopsy. Biopsy came back confirming that this was in fact a mets to the liver. Our local cancer center sent us back to Pittsburgh to see a liver surgeon. This is a few days before Christmas. He was very kind and personable. He showed us on a diagram where the lesions were located in the liver and that he would like my husband to undergo a round of chemotherapy to see how the lesion responds, but he did think that he would be a surgical candidate. This bit of silver lining did help us get through Christmas with our kids. My husband started chemotherapy right after Christmas and had his repeat PET scan in March, which did not light up at all. We were ecstatic!!!!! The oncologist and the liver surgeon were very optimistic. They wanted him to finish a couple more rounds of chemotherapy and have an MRI in May. Again the MRI in May showed no evidence of regrowth in the liver. They both agreed to give my husband the summer off from chemotherapy (the standard 5FU), and rescan him again in August. Unfortunately, this time there are two areas of tumor regrowth in his liver and an enlarged lymph node. How can you go from being tumor free and in three month's time have this thrown at you????? He is to have another PET scan in a week and then see the liver surgeon. I point blank asked the oncologist if he is still a candidate for surgery, and his response to me was "he responded to the chemo so good the first time, lets remain optimistic. I am sure like most of you when you receive any news, the first thing you do is hop on the internet. BAD IDEA!!!!! I don't know when I got my medical license, but I guess I feel that I can now interpret case studies. I have never been a person to take it a day at a time. I cannot stop crying. Every time I look at him or our little girl, I feel like I am dying inside. How can I be the warrior he needs in this battle? My husband is very closed off in general to feelings and emotions so I can't even get a good read on how he is feeling. Part of me wishes he would scream, cry, break something so I would now how to comfort him, but he is just so stoic. Any words of wisdom, comfort, advice, similar stories would be so much appreciated. Thank you for allowing me to be part of your group and your journey.
Kate

[jalusa]

Sorry that you are here, but you will find that this group is helpful.

My suggestion to you is to get a 2nd opinion. MANY with liver mets do very well at Memorial Sloan Kettering in NY.

Other will chime in.

[husbandswarrior]

Thank you for your reply. I was just looking up Memorial Sloan Kettering when I saw that someone had replied to my message. I will definitely look into this further.

[bitchslapped]

Welcome to Colon Talk Kate. The first thing to do is calm down, gather your thoughts as this is going to be a long ride. You already know how your DH is feeling...how anyone would feel w/a cancer dx. Don't try to make him verbalize it. Don't make this about you. It is about him. Yes, cancer is a family disease in that it has far reaching effects on everyone, but ultimately the patient is your DH. To be your DH's warrior as in your moniker, is to become educated as his advocate regarding his dx & through navigating the healthcare system on his behalf as you have apparently been doing. Helping in getting his mind off of cancer may do him more good than focusing on it or sharing his feelings if that is not his nature.

There is a search box tool here on CT that you can use to research certain things you would like to learn more about, read the stories of others. You can also ask questions of the members here for info & express/vent/solicit support for your concerns in helping you cope. You can also create a "signature" from the Control Panel as you will see others have done which appears below their postings. This helps members get a quick snyopsis of your situation in answering any specific questions you may have. Also we have a permanent "sticky thread" of common abbreviations for terms frequently used here that is also helpful. You've stumbled onto a great site here.

Cancer can easily return during a chemo break. They may go to 2nd line chemotherapy (Folfiri), assuming they used Folfox initially which is typical here in the U.S.

Best Wishes
Bitchslapped

[MrPleistocene]

One of the features of nearly all cancers is the unknown. This has got to be extra tough and isolating with such a rare location and presentation. My Grandpa was a big golfer. When He found out I wrote left handed, he told me I should learn to golf left handed because then you won't get as much advice about your swing, with the clear indication that more advice was worse. Unfortunately you've found yourself on the other side of the equation.

Chances are you won't be able to curb your impulses to be doing something (most likely on the computer) constantly about your husband, and familiy's, health and treatments. Take some time and prioritize these. One area that might be worth spending this energy on is engaging as many Dr.'s that have experience related to your situation. Oregon, North Carolina, Arizona, wherever. You don't have to visit them to get their input. This board will have a lot of good information and support, but just as rectal cancer and colon cancer are nearly identical, the differences of presentation and nuances of progression sometimes indicate different treatment paths. As a rare presentation, you might find some oncologists, even ones specializing in solid tumors, or CRC, that haven't seen many patients with your husband's history. Keep getting opinions until you are comfortable. I like to have two doctors say the same thing before I do anything that will have irreversible implications (esp. surgeries).

Something that I found emotionally helpful was to realize that I was feeling grief. The 'stages of grief' aren't carved in stone, but can be useful to help identify why these emotions are so strong and what to expect. We usually associate grief with the loss of something tangible. Losing something we already have. Much of my grieving was for things that, now, would never be. There might be people that say, 'suck it up' or some generally bromide about toughness or fighting. Once I realized that I was going to get mad. Then I would start to mitigate or bargain. (maybe I can do it this way and it will work out. If give up X, maybe I can focus and bring back Y). But Y kept getting further. Now I've got my ABC's and keep adding letters. I'll likely never get to X, Y or Z, but I wasn't going to get there even without a disease. I still had to mourn the loss though. The loss wasn't the thing I probably was never going to do, but the mere possibility. Finally, I moved on to the next thing. Sometimes hapiness. Sometimes contentment. Sometimes another round of grieving for something I never knew I even cared about.

That's not to say I was an open book. Many comments from friends and family indicated they thought I was quite stoic about the whole thing. Maybe I didn't see the point in crying or complaining. Whatever the reason, I still thought about all of this. If asked directly, I would talk about what was going on in my head.

That all sounds bleak, but this sucks right now. No sugar coating. Just don't let yourself get sucked down too far. Try and laugh where you can. Rember also. there are plenty of people on the board that have had liver mets and reached NED. I'm sure there are some small bowlers out there too. Patients overcome cancer all the time. No reason to think your husband won't be one of the many.

[Rob in PA]

Hi Kate,
First of all, your Onc shouldn't be telling you whether or not your husband is still a candidate for surgery....only your surgeon can tell you that, and vice versa, don't ask your surgeon if you think hubby should be doing chemo or not.

That said, I too had liver mets and was treated at UPMC Shadyside/Hillman in Pittsburgh and was extremely pleased with the treatment i received there. When i was on chemo I would just go to my local cancer center and they would administer it as you did with your husband.

Liver sugery has come a loooooooooonnnnnnnnnnngggggggg way in the past 5-8 years. If you must play Dr. Google, do not read anything that is dated more than five years ago. My liver surgeon (Holtzman) was terrific. Recovery was not too bad, and even though I've had recurrence in my lungs three times, it's never returned to my liver (knock on wood) or primary site (rectal).

My kids were 9 and 6 when i was diagnosed and, as you can see from my signature line, I've been through the ringer with this shit. Butt, my kids are now 17 and 14 (wow! have they grown) and I'm currently NED.

Don't lose hope. Seek a second opinion always. And, for pete's sake, try to limit your google doctoring .

Take care, please PM me if you have any Pittsburgh questions.

Rob

[PainInTheAss]

All of this, so far, has been such great advice. You should read these posts several times and really let them sink in. Especially about grief. I think there is a 6th stage of grief after acceptance I would call "retrigger." A movie, song, random thought, a sweater, anything can retrigger the realization of loss and it comes back to the surface. This happens over and over and over. For me, I do repeatedly grieve the loss of my pre-cancer life in this way. Other days, I accept it. This is a very human process. I still have retriggers of grief over the loss of my mother nearly 40 years ago.

The one thing I might add is that I have found that the ability to optimistic and avoid depression (depression is NOT grief... They are different) is within my control. I have chosen to believe I will be cured, mainly, because it just makes life more enjoyable. Maybe that's what your husband is doing. Let him! I decided a long time ago that I'd rather be wrong than miserable. Life is too short even without cancer not to live as much of it as you can in the best state of mind that you can. Enjoy every day with him and don't let worry and fear take that away from you.

[husbandswarrior]

thank you, thank you, thank you....especially to bitchslapped (how appropriate-love it). I first when I read your reply, I was like wow little harsh, but the more I think about it, I realize that I have been making this too much about how I am feeling and not enough of what I can do for my husband to advocate for his care and well being. Our daughter is almost 10. How have you all handled talking to your young children? How much information is too much? Do you wait and see how things are going before your approach the topic?

[CLD]

So sorry you are going through this. We are also in the Pgh area and feel very lucky to have world class docs close by. So far as what to tell the kids...Im all for age appropriate honesty. Life will be very different for them too for awhile too and knowing the truth will help them understand why. There was a recent thread about this topic that got very long about 2 months ago maybe a search will pull it up for you.

[midlifemom]

All good advice.
One more thing, get a large 3 ring binder and request copies of ct scans, radiologist reports, blood work, surgery reports, etc. Organize it into separate sections. This will come in handy, especially if you decide to seek a second opinion.
Good luck!

[PainInTheAss]

I know my older kids really didn't want to talk about it, like ever. But they did say that they weren't worried because I wasn't freaking out. So, I wouldn't talk to children if you're upset and you're going to lose it. It will make them very upset.

I waited until I had all my tests done and knew exactly what I was dealing with before I told them anything. I bore the burden of worry so they didn't have to. They all think I'm going to be cured, too, and we'll just stick with that. You might want to consult a professional on age appropriate discussions, especially if the child had access to the Internet. But I think you'll figure it out just fine.

[husbandswarrior]

Thank you all so much for your advice and guidance.

[TheLadySkye]

I too have small intestine cancer. If you want to talk directly, PM me. I'd be happy to answer any questions I can.

[bitchslapped]

thank you, thank you, thank you....especially to bitchslapped (how appropriate-love it). I first when I read your reply, I was like wow little harsh, but the more I think about it, I realize that I have been making this too much about how I am feeling and not enough of what I can do for my husband to advocate for his care and well being. Our daughter is almost 10. How have you all handled talking to your young children? How much information is too much? Do you wait and see how things are going before your approach the topic?

No, I wasn't trying to be a smarty pants, but truth be told we just have to toughen up & snap out of it around home & lean on someone else to hold us up from time to time. If you read my signature, I have been a caregiver, twice. It's a big responsibility, tough job & we have to hold it together for our loved ones. Those w/kids even tougher. I don't think I would tell a child any more than they need to know. If they ask questions, answer honestly in simple terms. Follow her lead. You might consider letting the teacher/school counselor know in case they observe any changes if you have concerns there.
Here is a link to a thread on here for wives or any family member to share:
viewtopic.php?f=1&t=18704&p=408853&hilit=wives+of+husbands+with+freaking#p408853

It gets lost in the shuffle sometimes, but posting in it will bump it up to the front page.

I too have small intestine cancer. If you want to talk directly, PM me. I'd be happy to answer any questions I can.

She may not have the ability to pm just yet, but I hope some of the questions are addressed publicly to help other small intestine cancer patients that may come along, especially since it is apparently rare. I did a quick search think there is @ least one other person on here that has had it.

Best Wishes
BS

[husbandswarrior]

Well tomorrow is PET scan to see what the enlarged lymph node is doing. It is funny how you can't wait for the scan date to get here and then once it arrives, you feel well I can wait a few more days, but it doesn't do any good to stick your head in the sand. Appreciate all the good thoughts, good karma, and prayers (if so inclined to) that you all can send our way.
With much respect and appreciation,
Kate