Husband recently diagnosed w Rectal Cancer

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Hopefulprayers79
Posts: 11
Joined: Thu Aug 03, 2017 3:00 pm

Husband recently diagnosed w Rectal Cancer

Postby Hopefulprayers79 » Thu Aug 03, 2017 3:06 pm

My husband has been recently diagnosed with Rectal cancer. Just looking for advice and support.
Last edited by Hopefulprayers79 on Sat Aug 05, 2017 10:40 am, edited 1 time in total.
Wife of Husband 43yrs old
Stage 3 Rectal Cancer
No family history

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Lee » Thu Aug 03, 2017 5:12 pm

Hi and welcome, sorry for the reason you are here. You have come to the right place for information and support.

The first few weeks can be very overwhelming. Butt once you have a staging and a plan of action, you will start to feel like you have some control over your life again.

Know that cancer is not the death sentence it once used to be. There are many people beating this cancer today. I am a 13 year survivor. And there are many more like me.

Have they staged your DH yet? Do you know if it's colon or rectal cancer? How old is he?

Feel free to ask any questions or concerns, believe me have all walked in your shoes and know where you are coming from. Know that you are NOT alone here.

Hugs to you and your DH

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Hopefulprayers79
Posts: 11
Joined: Thu Aug 03, 2017 3:00 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Hopefulprayers79 » Thu Aug 03, 2017 9:28 pm

Hi, thanks for the encouragement. We just found out Friday after he had a Colonoscopy done because he was noticing blood in his stool, weight loss, and sudden, unexplained fevers. She said she thinks it's stage 3 and hopefully not stage 4. I am not sure how she could tell just by looking at it. They did a biopsy and CT scan. He had an MRI yesterday and he has an appt w a Colorectal Surgeon tomorrow. She did say rectal in the sigmoid colon and rectum. I always forget there is a difference. He is only 43yrs old and it doesn't run in his family so we were pretty shocked. I am so nervous. He has only been having symptoms for a few months. I can't believe that is might have progressed to stage 3 or stage 4 already. Any tips and advice would be greatly appreciated. Glad to hear you made it through.
Wife of Husband 43yrs old
Stage 3 Rectal Cancer
No family history

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Lee » Thu Aug 03, 2017 10:01 pm

Hopefulprayers79 wrote: She said she thinks it's stage 3 and hopefully not stage 4. I am not sure how she could tell just by looking at it.



They were looking for a possible met or spread in CT or PET scan. They did not find it, surgery will be the final battle. the pathology report will be the final answer.This is a good sign for your husband. They were also looking for this with me 13 year ago.

I assume they will be doing radiation prior to surgery. Typical with rectal cancer. Colon/rectal caner is sneaky, my only symptom were my bleeding hemorrhoids. Butt please note, I am a 13 year survivor of rectal cancer. Your husband can bet this, NEVER give up the hope. There are many people on this forum and other places who are NED today with a stage III diagnoses.

Again never give up the hope,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Husband recently diagnosed w Colon Cancer

Postby Maelleous » Fri Aug 04, 2017 4:58 am

I'm sorry to hear that, and wish you the best. This forum is a godsend -- helped me through a long and difficult journey. My case was similar to his, 35 and noticed blood in stool. I didn't have the weight loss, but was still stage 3C in the end. I am cancer free now and just finished my reversal (right at the one year NED period) so he can do it. That sounds good they didn't see it anywhere else.

My advice to you -- if you are not 100% comfortable with your local doctor, please be sure to see a major institute for surgery and treatment. Even if just for a second opinion. I am so glad I followed this advice myself, my local dr experiences turned out very bad, which I don't want to to scare you with, as I am sure there are some great ones, but the bigger institutes have such better training, care, and technology typically.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Husband recently diagnosed w Colon Cancer

Postby Maelleous » Fri Aug 04, 2017 4:58 am

Which to clarify (if you are not already at one)
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Husband recently diagnosed w Colon Cancer

Postby Volfan » Fri Aug 04, 2017 5:47 am

As previously stated the first few weeks are very overwhelming.
My advice for your first appointment would be write down questions you have before hand. There will be a lot of information coming your way at the first appointment.
If you don't understand something the Doc is saying don't feel bad about asking for them to explain it to you. Sometimes I have to remind my Doc to talk in plain English for me.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Soccermom2boys » Fri Aug 04, 2017 8:38 am

I would recommend using your cell phone to record the conversation at the appointments. They will understand when you explain it is so you can make sure you heard everything correctly. When you sit in there listening to all that is being thrown at you it can be overwhelming and you think you heard one thing and your spouse thought they heard something else, etc. Good luck, hoping for a low staging for your husband.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband recently diagnosed w Colon Cancer

Postby NHMike » Fri Aug 04, 2017 10:26 am

Sorry that you're dealing with this. In some cases, it's harder for the spouse in some areas - this is what my wife told me when I wasn't feeling great about it.

My case sounds similar to your husband's and I just started chemo/radiation this week. It's tough, especially at first as there's a steep learning curve on figuring out what you have, availing yourself of services (local vs specialists), traveling to get second opinions, picking treatment centers and options and keeping up with the latest in clinical trials and drug therapies.

It will feel overwhelming but there are lots of people here to answer questions and you can go through old threads to read about the stories of people that have been through this.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Hopefulprayers79
Posts: 11
Joined: Thu Aug 03, 2017 3:00 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Hopefulprayers79 » Fri Aug 04, 2017 11:35 am

Thanks everyone. His appt with the surgeon went well. I asked the doc what stage he is in and he said they are still trying to figure that out. He did say that as far as they can see so far, it doesn't look like it has spread to the liver but possibly the groin area. He said it is very treatable but because the tumor is so large he wants my husband to undergo Radiation Chemotherapy for five weeks straight. He said he needs the tumor to shrink so he will have more room to work. He is still trying to figure out when to take time off. Does Radiation Chemotherapy make you sick? The doctor said they add chemo just to make the radiation work better. He said he plans to do surgery in about 3 months. He said he will need a temporary colostomy and depending on how things go, maybe a permanent one if he has an blockages after surgery. I am still nervous but I do feel a little better that we have a plan in place. And cost is another concern. All these copays and specialists are adding up. He does have great insurance with his company though. They pay 90% and he pays 10%. I think his max out of pocket is $1500 so hopefully he will be good to go after that. I am really glad I found this forum. It helps to talk to people who have been through or are going through this.
Wife of Husband 43yrs old
Stage 3 Rectal Cancer
No family history

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband recently diagnosed w Colon Cancer

Postby NHMike » Fri Aug 04, 2017 1:03 pm

Your husband's situation is close to mine. The standard treatment for Stage 3 is 28 days of chemo and radiation, 6-8 weeks of rest, surgery, 6-8 weeks of rest, chemo.

Your husband's insurance is somewhat better than mine. Your max out-of-pocket should be $1,500 and that's excellent these days. Yes, the bills do add up quickly. I'm at about $1,600 OOP right now with about $35,000 in overall bills. I think that prescriptions aren't included in max OOP. He could take 5FU which is an infused form where he's connected to a pump for it or Xeloda which is oral medication. The Xeloda that they gave me costs $6,400 retail for four weeks. The cost to me with insurance is $180.

The potential for a bag may not be pleasant to think about but, one step at a time.

Radiation can have side-effects. Chemo can have side effects. These are discussed in a lot of threads on this forum.

As far as when to take time off goes: a lot of people work through chemo and radiation. I'm doing that right now. I think that it's harder to do if you're on infusions because you're hooked up to a pump for so long. I really wanted to get started as soon as possible as there's a tumor that's growing inside getting bigger and potentially causing blockages and it could spread to other parts of the body at which point it becomes Stage IV.

So the schedule would be:

28 days (6 weeks) chemo and radiation
6 weeks rest
surgery

And that's where your surgeon gets 3 months from now (12 weeks).

I would recommend a genetic test as well. There are certain kinds of colorectal cancer that can be treated via other means (new drugs) that may be easier to handle.

You can go through my blog thread at viewtopic.php?f=1&t=58447 to see what I've gone through at somewhat of a micro-level.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Husband recently diagnosed w Colon Cancer

Postby Soccermom2boys » Fri Aug 04, 2017 3:48 pm

Hopefulprayers79 wrote: He is still trying to figure out when to take time off. Does Radiation Chemotherapy make you sick?


Truly everyone reacts differently to all of the various treatments so I can only give you my experience but I would say it was a fairly issue-free radiation experience for me. Only during the 4th week did the bowels start having issues, but Imodium is helpful and most likely he could work through it--not sure what he does? Yes he will get more tired as the treatments go on so he will figure out physically what is/is not possible and just know it is in his best interests to listen to his body and take it easy during those times. He will want to save up his time for the surgery, of course depending on what his surgery entails he may only need two weeks, mine needed at least six weeks as I had to have the full APR with a permanent colostomy.
I had to take 1300mg of Xeloda twice a day during radiation treatment days and I felt off at times, but I wouldn't classify it as making me sick. He definitely wants to take those pills within thirty minutes of eating, that makes a difference with queasiness.

I feel for you, this was me two years ago and it's overwhelming, but there is an end date, just takes many minutes, hours, days, and months, but you'll get there. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Husband recently diagnosed w Colon Cancer

Postby TrojanGirlie » Sat Aug 05, 2017 12:20 am

So sorry you have to go through this too. My husband was diagnosed last year at Stage 3. He started with chemo radiation for 6 weeks and he worked the entire time. He scheduled his chemo radiation for 7am and was able to go in to work at 8am. He didn't really feel any effects except a little bit of hand foot syndrome from his Xeloda pills in week 6, but it went away once he stopped chemo radiation. He also continued to work during his 6 months of Folfiri and Erbitux. He would take a day off on the day he had chemo and then would leave early on his disconnect day. Everyone responds differently to the medications and I think it also depends on what type of work he does. My husband has a desk job so it wasn't very physical. But I know a friend whose husband has Stage 4 colorectal cancer and he does construction so he had to take off work during his chemoradiation treatment because he didn't want to have too much sun exposure. The first few weeks after diagnosis were incredibly overwhelming. We were sure that he would have to stop working and the doctors can sometimes give you worst case scenarios. But eventually you find a type of routine and a new "normal". Try to stay positive!! We wish you and your family the best.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Husband recently diagnosed w Colon Cancer

Postby ocstacy » Sat Aug 05, 2017 3:23 am

So the schedule would be:

28 days (6 weeks) chemo and radiation
6 weeks rest
surgery


My mom has identical DX and has 8 more days left. She has done surprisingly well for 77 years old. If I can recommend anything that has worked for her is after eating breakfast and dinner, time exactly 25 min. than take your Xeloda. That really seems to help my mom and she doesn't get nausea. Someone in this feed, shared that with me and I think everyone should try it. Too bad the dr. don't mention or the nurses. Mom can't go anywhere after her tx cause she is pooped out. She just want to watch T.v. and I do all of the grocery shopping for her. I would do anything for my mom. My colonoscopy is in 10 days! Can't wait! I will be out. Good luck with everything!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Husband recently diagnosed w Colon Cancer

Postby LeonW » Sat Aug 05, 2017 10:48 am

ocstacy wrote: . . . after eating breakfast and dinner, time exactly 25 min. than take your Xeloda.

I didn't time it, but took the pills shortly after after meals. I guess 15-25 minutes after and no need for nausea medication throughout any of the cycles.
It could well have been the filled stomach; if not it must have been sheer luck . . .

Best wishes L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!


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