Supporting my husband with a new DX

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melissadc76
Posts: 4
Joined: Tue Dec 04, 2018 5:03 pm
Facebook Username: melissa.syria

Supporting my husband with a new DX

Postby melissadc76 » Tue Dec 04, 2018 6:01 pm

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.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emergency Colostomy for bowel blockage 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Treatment Plan: Neoadjudivant Chemo starting 12/26/2018

Punky44
Posts: 130
Joined: Mon Oct 01, 2018 4:29 pm

Re: Supporting my husband with a new DX

Postby Punky44 » Tue Dec 04, 2018 6:59 pm

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?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

mandosquiddy
Posts: 19
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Supporting my husband with a new DX

Postby mandosquiddy » Tue Dec 04, 2018 7:04 pm

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.
4/2017 DX: sigmoid colon cancer
colon resection with colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery HIPEC skipped bc complications

Gravelyguy
Posts: 82
Joined: Thu Jul 05, 2018 6:03 pm

Re: Supporting my husband with a new DX

Postby Gravelyguy » Tue Dec 04, 2018 7:08 pm

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
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection cancer is out of here!
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12 clear scans, CEA .9 still NED!

Getwell
Posts: 1
Joined: Tue Dec 04, 2018 11:30 pm

Re: Supporting my husband with a new DX

Postby Getwell » Wed Dec 05, 2018 12:09 am

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.

dliu
Posts: 43
Joined: Sun Jun 03, 2018 7:16 am

Re: Supporting my husband with a new DX

Postby dliu » Wed Dec 05, 2018 7:06 am

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,
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Jannine
Posts: 90
Joined: Wed Jun 20, 2018 7:46 am

Re: Supporting my husband with a new DX

Postby Jannine » Wed Dec 05, 2018 7:49 am

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!
Last edited by Jannine on Wed Dec 05, 2018 8:34 am, edited 2 times in total.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

hiker
Posts: 89
Joined: Thu Aug 09, 2018 10:15 am

Re: Supporting my husband with a new DX

Postby hiker » Wed Dec 05, 2018 8:29 am

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
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

melissadc76
Posts: 4
Joined: Tue Dec 04, 2018 5:03 pm
Facebook Username: melissa.syria

Re: Supporting my husband with a new DX

Postby melissadc76 » Wed Dec 05, 2018 11:05 am

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.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emergency Colostomy for bowel blockage 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Treatment Plan: Neoadjudivant Chemo starting 12/26/2018

hiker
Posts: 89
Joined: Thu Aug 09, 2018 10:15 am

Re: Supporting my husband with a new DX

Postby hiker » Wed Dec 05, 2018 2:38 pm

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
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: Supporting my husband with a new DX

Postby martd » Wed Dec 05, 2018 6:04 pm

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
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

Koreysue
Posts: 57
Joined: Mon Apr 30, 2018 2:36 pm

Re: Supporting my husband with a new DX

Postby Koreysue » Wed Dec 05, 2018 6:14 pm

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
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8


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