The Colon Club

Hello world.

I'm brand new to this, supporting my 48 yo husband with a new diagnosis of colon cancer. Any and all help, well-wishes, advice, and support is welcome.

Our story:
Fri 10/19/18[/b] My 42nd birthday, a Friday, hubby starts to get a belly ache.
Sat 10/20/18 Urgent care, misdiagnosed as H.Pylori, gave him antibiotics & sent him home.
Tue 10/23/18 Saw primary care provider at Indian Health- told him to keep taking antibiotics, added iron pills for anemia. Ordered a stool sample.
Thurs 10/25/2018 Came to drop off stool sample at Indian Health, belly now extremely distended. DH stumbled into my office (I work as a psychotherapist in a building next to the clinic), and I rushed him to the emergency room. CT scan showed large tumor in his colon, complete bowel blockage. Immediate surgery needed for a colostemy. Surgeon comes in after the surgery, 10pm, devastated, says cancer is incurable, inoperable, discourages chemotherapy, discouraging all around. He apologizes, nearly crying. Says the tumor was so fixed to the pelvis, the bladder, that nothing would move it. Next couple days, dealing with the colostemy and his bowel cleaning out, nurses don't know how to change a colostemy bags. There was poop everywhere.
11/5/2018 New surgery for a new colostemy- the old one is sunken in and doesn't want to work- can't keep a bag on, keeps leaking. Another surgery, does better.

Now hubby is home. I worry because he gets skinnier and skinnier, he is pale, weak, tired. I mostly change his ostemy bag, etc. Some home health, but not much. His incision infected, burst during physical therapy. Now I'm repacking it with iodine tape daily.

We finally got an appointment at Huntsman Cancer Center yesterday. The surgeon is a professor, teaches and a colorectal specialist. No metastasis to lungs or liver! He wants a new CT scan. He thinks we might see a different picture without the distended bowels. Very hopeful compared to the first surgeon (just a small-town general surgeon). I called the old surgeon- he said, "Well if anyone thinks they can operate on that tumor, I want to talk to them first. They don't know what it looks like on the inside." New surgeon says if the tumor truly can't be operated on, they will try to shrink it with chemotherapy before operating.

So not sure who to listen to.

I worry about DH, he is so thin and pale. I am used to him being strong and capable- superman.
We were in the middle of adopting two babies from the foster care system, to add to our 4 children (2 mine, 2 ours). One of the babies already had to be transferred to another home, the other baby we will proceed with the adoption.

I can't concentrate at work. My work is falling behind, but I'm the only one who will be able to support the family now. The pressure is getting to me. I cry every day at work. Some days it feels like there is no hope. Some days are better. I try to explain things to the kids, who are strong and resilient.

I am so sorry you are going through this. It’s a very scary time (I’m going through it now as a caregiver for my mom.)

The good news is there are no mets to the lungs or liver.

It sounds like you are getting a much more optimistic view from the second doc.

I would encourage you to see treatment at a major cancer center if you can if you are unhappy with the approach of the second doc. A board certified colorectal surgeon is a must (sounds like yours might be?)

If it’s operable, awesome and if not, there is no reason I can see why chemo wouldn’t be the next step?

Hi Melissa -

The start of my journey sounds very similar to you and your husband's. I had a blockage and emergency surgery and the surgeon (a general medium size city surgeon) told my wife it was about as bad as could be. About 10 days later my path report showed things were actually in pretty good shape. I encourage you to see an oncologist who specializes in colorectal oncologist if one is available to you. If your local doctors aren't offering much hope I would encourage you to look at one the major US cancer hospitals. I ended up at Mayo for part of my treatment. It's been a roller coaster and it likely will be for you to. I've been lucky to have a great support system especially my wife. She keeps life organized and keeps me grounded when anxiety starts to kick in about the 'what ifs'. I also know she has struggled with things at time. Don't be afraid to let your emotions show and don't be afraid to seek therapy if needed. A lot of cancer centers have resources available for the mental health of the patient and their family.

I'm wishing you the best on your journey. I haven't posted a lot here but it is a great resource full of many friendly folks. Don't be afraid to ask questions. Keep us updated.

Hi Melissa,

I am so sorry you guys have to go through this. It is tough no doubt.

My dad was an area director of the Indian Health Service back in the 70’s. We traveled a lot and all of my health care growing up was in Indian health service clinics. We had some great Dr.’s bu they were almost always young and not as experienced. I would definitely go with what the 2nd Surgeon says. You also need to see an oncologist who can advise you about chemo options.

As far as supporting your husband goes, I would gently get him to eat as much as he can to get his weight back up. At this point in the game anything he wants is fine.

I would also really push the pace to get all of the scans done and see the 2nd Dr. again.

You guys are added to my prayer list,

Dave

I have been reading posts on this website since my DH was diagnosed in early Oct with stage 3c colon cancer after having to have emergency surgery. He is young (39), no family history and otherwise healthy..like you, we have 4 young children at home. This sucks. My DH is a “pull yourself up by your bootstraps” kind of guy. So over these past 8 weeks, through stomach staples, figuring out ostomy care, scans, infusions and trying to be okay so no one else gets scared, he has held strong to his positive attitude... and I’m trying my best to follow along, sometimes better than others. I have zero advice, but I felt the need to let you know that you are not alone. My DH will have his 4th infusion of 12 next week. I’ll continue reading these message boards at night, so I pray that I see your DH gets the care & best treatment out there! Take care of yourself too.

Hi Melissa,

I can't give much advice except to say that what you are feeling is perfectly normal. There will be time when you feel helpless, and that's okay, but it's only the start of your journey and with the right help (and the second doctor seems to be the person you want to talk to! Not sure about the first guy) things can get better. And I'm sure with the help and love of you and the kids your husband will get back to superman status in no time.

Wishing you peace on these very hard days,

So sorry for how you got started on this journey, but I am glad you are here now. I have gotten a ton of useful information and perspective from this forum.

It sounds like the 2nd surgeon probably knows what he's talking about, but don't be afraid to get a 3rd or even 4th opinion, as others have suggested. From what I have read from others on these boards, it seems like surgeons who don't specialize in colorectal work often are very off base about how bad something looks, and tend to err on the side of "this can't be treated/cured" when something is beyond their knowledge. I would go for the additional CT scan to find out how things look now, and put the 1st surgeon's opinions behind you. Your husband's records, including the CT scans, can be sent to other specialists, too, to get their take.

One thing that helped me a lot was just knowing that so many other people have walked this road and come out the other side. The lack of lymph node involvement is great, and it sounds like you are in good hands now.

I was able to gain a little weight back between surgery and the beginning of chemo a month later, and I've managed not to lose any more weight over 12 months of chemo. I hope your husband is able to gain weight back reasonably quickly.

Good luck to you both, and please keep us posted!

Hey Melissa,

It's normal to lose weight and generally look bad when going through cancer and its treatment. I was 5'9", 205lbs. and built like a tank before all this started. After my liver resection, I was 145lbs. - and yes, I looked bad, very bad. But now I'm back to almost 180lbs. and feeling great. That's after 2 major surgeries, 1 minor surgery, 14 rounds of systemic chemo and 5 rounds of HAI pump chemo. Your husband can get back to his old self once all this is over.

My recommendation to you is to get him to a major cancer center as soon as you can - there is no time to waste. I started out locally and was told after my colon resection surgery by 4 oncologists/surgeons that nothing other than chemo could be done for the liver mets and I would have at most 2 years with chemo. At my first meeting with the oncologist and surgeon at MSK I was informed they would be working together towards curing me. Here I am, almost at the 2 year mark and doing great. I have my scans every 3 months and they can't find any cancer in me.

There is hope, but you have to get to a facility with the experience to help.

hiker

hiker wrote:Hey Melissa,

It's normal to lose weight and generally look bad when going through cancer and its treatment. I was 5'9", 205lbs. and built like a tank before all this started. After my liver resection, I was 145lbs. - and yes, I looked bad, very bad. But now I'm back to almost 180lbs. and feeling great. That's after 2 major surgeries, 1 minor surgery, 14 rounds of systemic chemo and 5 rounds of HAI pump chemo. Your husband can get back to his old self once all this is over.

My recommendation to you is to get him to a major cancer center as soon as you can - there is no time to waste. I started out locally and was told after my colon resection surgery by 4 oncologists/surgeons that nothing other than chemo could be done for the liver mets and I would have at most 2 years with chemo. At my first meeting with the oncologist and surgeon at MSK I was informed they would be working together towards curing me. Here I am, almost at the 2 year mark and doing great. I have my scans every 3 months and they can't find any cancer in me.

There is hope, but you have to get to a facility with the experience to help.

hiker

Thank you, Hiker, for your hopeful perspective.

He is 6'2" and has always had a lot of muscle, because of his work as a Union Ironworker. He has been up to 280 but normally hovers around 240-260. Now he is at 201 lbs.

So we live in a very small, rural town in Idaho. It is about a 3 hour drive to Huntsman Cancer Institute, which I thought was a major cancer center?!? in Utah. The 2nd surgeon is a professor, colorectal specialist, and although Huntsman is ranked 48th for cancer centers in the USA, they appear to be ranked higher in colorectal issues. He really seems to be a lot more hopeful and practical than the first surgeon from the ER in our town. Do you think we should get him somewhere else? Travel is very rough on him. The 3 hour drive to SLC was rough and he slept the entire next day.

At 6'2" and 201lbs, he's light but not too light in my opinion. I have a good friend who was 6'5" and 165lbs. when he was having a difficult time with diabetes and he's fine now.

If your husband is stage 1 or 2, a cancer center ranked 48th may be okay. If he turns out to be stage 3 or 4 or if his cancer is difficult to get to, I would look into a major center (like one of the top 5) if at all possible. I really don't like to travel and I absolutely don't like cities. But I ended up driving 4 hours to the center of hell...I mean NYC...for my cancer treatment (no offense to those of you who live in or like visiting cities...I personally can't think of anything I would like to do less). Was in Manhattan almost a week for my surgery (wife and kids stayed in the city with me) and then I either traveled to NYC or to one of the MSK satellite facilities in NJ every week or two during chemo. Since I finished chemo, I only travel into NYC once every 12 weeks and to the satellite facility every 12 weeks, on an alternating schedule - so I'm at one of those places every 6 weeks and that's mainly because I have an HAI pump that has to be serviced and there are no facilities closer than MSK to me who will touch it. A big city facility can also work with a local oncologist to get the chemo done locally if that helps. I couldn't do that since I was part of a clinical trial my oncologist was doing. If I can do this, anyone can.

Do yourself a favor and forget about the small town general surgeon. I'm sure he's fine for minor surgeries. But cancer is not a minor issue. Don't waste your time consulting him or thinking about his negative attitude. He would be in way over his head with your husband's surgery. All the folks who told me I wouldn't make it two years are in my past and I have no intention of contacting them other than to send them each an anniversary card this coming March and every March thereafter to let them know I'm still here - petty I know but it'll make me feel good.

Right now you feel like you're falling apart because of all the unknowns. Once you have a treatment plan in place, you will start to feel more normal. And like my big city MSK oncologist said when I told her I felt like I had no hope prior to coming to her, there's always hope.

hiker

I lost 20 pounds, went from 150 to 129. I wasn't a big guy to begin with so 20 pounds was alot to lose. Most of my weight loss was from not eating right because of the tumor blockage. Once I started treatment the chemo killed the tumor , I actually put my weight back on during treatment.

That's excellent advise you got from hiker. I know you feel completely overwhelmed right now and the thought of traveling long distance for treatment must make it even worse. But there are options that can help. Most all major cancer hospitals have extended stay hotels nearby that are pretty much exclusive to them. And there are assistance programs, many provided by American cancer society that help financially and logistical. Just start calling the ones that work for you to get the ball rolling. MSK is an excellent choice. On the west coast there's Mayo Clinic in Phoenix, UCLA and I think in Seattle there is a major cancer center also. Mayo Clinic could be considered if the surgery ends up being very complicated with it involving the pelvis. They are not only a cancer center but specialize in very complex medical siuations. I'm receiving treatment at Mayo in Phoenix, they have been absolutely incredible, I can't say enough good about them. MSK and MD Anderson in Houston are the top 2 cancer centers in the U.S. Mayo in Rochester is number 3.

Dan

With a complicated case I would definitely see about Memorial Sloan Kettering or MdD Anderson or others in the top 5
If my cancer returns, that is what plan to do
Sorry for your husbands diagnosis- please keep us posted
Korey

UPDATE

Now that the initial diagnosis has sunk in a bit...
Now that we have consulted, gotten scans, gathered opinions, etc.

I feel like we have a grasp on the big picture of what my husband is facing.

His tumor was staged 3C. It is large, stuck to his pelvis, perhaps affecting his bladder, and not easily operable at this point.
The good news: no known liver/lung involvement.

The doctors recommended neoadjudivant chemo to try and shrink the tumor enough to operate.

He gets a port placed 1/9/2018, starts chemo bright and early the next day. Also scheduled: a scope to explore his bladder. Needless to say, hubby is not excited about having a scope placed up his penis.

Is there anyone who has gone through similar things? Like had an inoperable tumor, then successfully reduced it with chemo, then operated? I need some hope, some good news, some path forward.

Yes .
Chemo allowed my mum to become operable . Her liver was like a fruit bowl.Some Mets were as big as small oranges . Chemo reduced them right off the scan . Her PET scan showed a dot the size you would get from a pen on paper !!
Her oncologist even cracked a smile , just a little one though . Chemo has allowed her to become operable twice in fact . The third time she had a lung met which was operable. The consultant wanted to put her on some observational research where they would watch it grow !!!!! That will be a no , and we politely declined the offer .
We had seen chemo do some amazing things . Hope it does the same for your husband .
Take care ,
Stu

melissadc76 wrote:UPDATE

Now that the initial diagnosis has sunk in a bit...
Now that we have consulted, gotten scans, gathered opinions, etc.

I feel like we have a grasp on the big picture of what my husband is facing.

His tumor was staged 3C. It is large, stuck to his pelvis, perhaps affecting his bladder, and not easily operable at this point.
The good news: no known liver/lung involvement.

The doctors recommended neoadjudivant chemo to try and shrink the tumor enough to operate.

He gets a port placed 1/9/2018, starts chemo bright and early the next day. Also scheduled: a scope to explore his bladder. Needless to say, hubby is not excited about having a scope placed up his penis.

Is there anyone who has gone through similar things? Like had an inoperable tumor, then successfully reduced it with chemo, then operated? I need some hope, some good news, some path forward.

First of all, I was very happy to hear you got your husband to Huntsman Cancer Institute since it's an NCI-designated cancer research facility. That way he'll receive the best care.

Second, it's not at all unusual to have a tumor that's too large for surgery, have it shrink from chemo, and then be eligible for a resection. Much depends on how he responds to chemo so the sooner he gets started the better.

I started chemo the day after they placed my port too. Try to see if they can implant a "power port." If so, he'll be able to use it for CT scans in addition to chemo, which makes it easier. Also, ask the surgeon to leave in the needle so it's ready for chemo the following day. They can cover it with a waterproof plastic bandage. The area surrounding my incision was very sore so not having to poke it with a needle the next day was very good!

The hardest part of the cancer journey is at the beginning. Everything feels so overwhelming. You have to learn a whole new vocabulary, find medical experts, make appointments, and learn all the ways to handle chemotherapy. Keep notes of every doctor meeting and start a folder with lab results, etc. Make sure he gets a CEA test along with genetic testing (BRAF, KRAS, MLH1, MSH2, MSH6, PMS2, etc.) Hopefully, you'll see his weight improve as the tumor shrinks and he can eat again. I know I felt better within weeks of receiving my first chemo.

Let us know how we can help support you. We're here for you!

Hugs to you!
Juliej