New and husband just diagnosed

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prayingof3
Posts: 16
Joined: Sun Sep 10, 2017 12:22 pm

New and husband just diagnosed

Postby prayingof3 » Sun Sep 10, 2017 12:37 pm

Hello everyone! My husband was just given the bad news and diagnosed on Friday. He is 49. I don't even know where to start and I found this board. I have been in tears all weekend and am trying to get all the information I can and pull myself together. So let me start from the beginning. He has been having problems for several months with constipation and urgency and I didn't pay much attention to it at first because he has always seemed to have some issues with constipation. It started becoming more and more noticeable to the point that everyday was worked around him feeling like he needed to go and barely could go. So, I started asking him questions about it and when he told me there was blood, I got right on the phone the next day and made him a doctor's appointment that he didn't even want to go to. I insisted and told him he was going. Within the last week, he went to his normal doctor and then to a gastro doctor and then had the colonoscopy. I sat there for 4 hours while he was having the scopes done and people kept coming out with their family member until I was the last one left in the office. I knew something had to be wrong. I started crying when the doctor walked in because I could tell by the look on his face. He told me that the news was bad and he had cancer. He said there was a large malignant mass with partial obstruction down close to the anus. He also removed 3 other large polyps from other places. Of course I asked all kinds of questions and we are being referred to a colorectal surgeon next week to see if it is even operable. The doctor that did the scope didn't seem too hopeful at all and I am just devastated. He said there may not be a cure but there would be treatment. I feel like this is really bad. I know nothing about cancer and everything we were told sounds like my husband may not make it. Please help with any advice that you have, I would so much appreciate it! Thanks!
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV

Maelleous
Posts: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: New and husband just diagnosed

Postby Maelleous » Mon Sep 11, 2017 7:03 am

I can't tell you with 100% certainty but I believe it is always operatable. They can remove the entire colon if needed. Be sure to also get a second opinion, especially if you are going to just a local place. Go to a big institute and see the experts there. I am SOOOO glad I took the advice from a guy at work and went to Cleveland clinic. The local surgeon was just going to cut it out and connect the two sides with open surgery. I ended up at Cleveland clinic who realized I was a lot more extensive than the MRI showed (the other surgeon wasn't even going to do an MRI) and I had to have a temp bag. I am cancer free one year later and had my bag removed.

He will need CT scans to make sure it hasn't spread, but if it is isolated in the colon, they can do chemo/rad first, then operate, etc. There are a lot of options. There are plenty of people on here that have had stage 4 major tumors and came through fine. Schedule and appt with a big institute if you havne't already and check all your options. I wish you and your husband the best and will pray for you. It is scary, but there is also hope.
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!

thubler
Posts: 26
Joined: Tue Sep 27, 2016 9:22 am
Facebook Username: Ted Hubler

Re: New and husband just diagnosed

Postby thubler » Mon Sep 11, 2017 7:21 am

Im sorry that you have to be faced with this. You have found a great resource here because it seems you can always find someone that has or has gone through exactly what your husband and you are facing. I know it seems bad at the beginning, especially when it's unexpected, but take a breath this cancer is treatable and beatable!! I know it is hard and it seems like you have a long road ahead of you but stay positive!!! You can and will get through this!!! If I can offer any advice, read the colon calander and on the rise profiles, they were very inspirational for me during treatment. Your family will be in my prayers..
III b CC diagnosed at 35 years old.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Colon resection May 2016.
2/41 lymph nodes positive.
Started Chemo June 2016 Folfox
Finished Chemo November 20, 2016
Clear Endoscopy and Colonoscopy 12/6/16
CT scan 02/07/17 enlarged mesenteric lymph node.
PET scan 02/15/17 Showed minimal uptake in two nodes, little to no metabolic activity. Too small to biopsy.
Stable CT scan 06/05/17
Stable CT scan 10/16/17
Port removed 11/03/17

jhocno197
Posts: 809
Joined: Mon May 11, 2015 9:33 pm

Re: New and husband just diagnosed

Postby jhocno197 » Mon Sep 11, 2017 8:37 am

Unfortunately, it is not true that they are always operable. My husband wasn't operable, nor are many other people. This doesn't mean that there is no hope.
If your gastro wasn't a colo-rectal surgeon, he had no business telling you anything about whether or not it is operable.

Things that are important to find out: are they going to do testing on the tumor? If not, find new doctors. Testing is important because it can indicate treatment options. You need to know at minimum KRAS, BRAF, and MSS/MSI status.

Your husband will need scans to check for any spread. At least a CT, possibly a PET and/or MRI.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New and husband just diagnosed

Postby susie0915 » Mon Sep 11, 2017 8:51 am

I'm sorry you have to be here. I know when you are first told it is devastating and you think the worse case scenario. A lot of fear is of the unknown. After meeting with the surgeon, he will schedule a ct scan to check if it has spread to other organs, and probably an endoscopic ultrasound if it is in the rectum. This will show how much it has penetrated through the rectal wall and if it appears if lymph nodes are affected(although they never know for sure until surgery and removal the lymph nodes are taken and tested).

Your first instinct is to hurry up and get it out, but it is definitely important to get a second opinion. You need to have a board certified colorectal surgeon, especially for rectal cancer. Rectal surgery is a more intricate and you want someone experienced that can remove the tumor with clear margins and give you the best possible quality of life after. I met with surgeons, radiation oncologists, and oncologists at two different hospitals and also spoke with a gastroenterologist that was a friend of my sister many times during that time. I ended up going to the hospital I went for a second opinion as I felt most comfortable with the doctors there treating me even though the treatment was going to be the same at both.

This will consume your life for the next year or so, but know there are many people on this forum at all stage levels that have been cancer free for a long time. The support and information you receive here will be so helpful. The fear of the unknown is consuming you now, but once you go through the process, ask all the questions and decide on a treatment plan, you will fell more in control. Write down every question you have. You are a great advocate for your husband. Good luck with your appointment. Prayers and hugs.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

DarknessEmbraced
Posts: 2826
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New and husband just diagnosed

Postby DarknessEmbraced » Mon Sep 11, 2017 3:57 pm

I'm sorry you and your husband are going through this!*hugs* It's such a roller coaster of emotions! I'm glad he's seeing a GI surgeon next week! Waiting is so awful!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

kiwiinoz
Posts: 1079
Joined: Thu Jan 03, 2013 11:44 pm

Re: New and husband just diagnosed

Postby kiwiinoz » Mon Sep 11, 2017 6:34 pm

After things calm down you will realize that despite you and your husband wanting to get things "out" as soon as possible, the choices you make now will impact your outcome in a big way.
He has cancer, so you can't change that. Rushing will lead to making ill informed decisions so get 2nd opinions, and certainly, go to a specialized cancer clinic where the specifically deal with cancer and the ongoing issues. 3 cm from the anal verge is very close and there is a risk of a permanent colostomy, prior to that there may be chemoradiation to shrink the tumour to make it more operable and give room to get cleaner margins when you do get operable.

prior to that, get a CT Scan, get it staged and get some good medical advice.

I was given 2 years to survive and now it is 4 years 9 months, and I am glad that my surgeon (specialized colorectal cancer surgeon) took Christmas holidays prior to having surgery

Let us know how it goes
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 March 2017
Port Out 26 March 2015

NHMike
Posts: 516
Joined: Fri Jul 21, 2017 3:43 am

Re: New and husband just diagnosed

Postby NHMike » Mon Sep 11, 2017 6:52 pm

I'm sorry that you're going through this but you did the right thing in getting him to see a doctor to get the colonoscopy so that you have an idea as to what you are dealing with. My situation has some similarities in that there was a larger tumor in that area with local lymph node involvement. If the other polyps are far away, then that can indicate spread and that's the difference between Stage 3 and Stage 4. The colon can be resected. If it has spread to other areas, typically the liver and lungs, then there are treatments to control tumors and surgery to remove them. But you're not there yet - they will have to do scans to determine if it is in other places.
I just finished 28 days of chemo and radiation and there are a lot of other people here that have gone through the same thing for rectal cancer, along with surgery and post-surgical chemo. There are lots of others that have had colon cancer as well. My estimate is that my cancer will take about one year to treat. If it spreads, then it will get more complicated but I'm hoping for the best while being a bit anxious about the worst.
You will likely need a team composed of an oncologist, surgeon and radiologist [assuming radiation treatment for the rectal cancer]. Ideally, you'd have a team of specialists - that is an oncologist that specialized in colorectal cancer, a surgeon that specializes in colorectal cancer and a radiologist that specialized in colorectal cancer. Most hospitals have generalists. I have generalists for my oncologist and radiologist at my local hospital but I got second opinions at a cancer institute which does huge cancer patient volume so they can have specialists for the various kinds of cancer. My surgeon is a colorectal specialist. If you have a great cancer hospital close by, please consider using them for your husband's treatment or, at least, a second opinion. Travel can be a headache to these places (it certainly was for me and it will be for my surgery and recovery) but the expertise may be worth a life.
We know that what you are going through is very tough as we have or had cancer, in various stages, or we are caregivers for those with cancer. So please feel free to vent, ask questions, advice, etc. And we'll do our best to help.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Basil
Posts: 206
Joined: Thu Mar 16, 2017 12:33 pm

Re: New and husband just diagnosed

Postby Basil » Mon Sep 11, 2017 7:08 pm

Sorry you have to be here. Cancer sucks.

I got almost the same news March 16 of this year. Partially obstructing mass in the rectum. I had bleeding. I was scared shitless.

Six months later I'd had some chemo, then surgery in late July and am now cancer free. Less than six months. You never know how a cancer journey is going to go but there are great results all over the place. You can read a bunch of them here. Wishing you the best of luck -
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

prayingof3
Posts: 16
Joined: Sun Sep 10, 2017 12:22 pm

Re: New and husband just diagnosed

Postby prayingof3 » Mon Sep 11, 2017 7:28 pm

Thanks so much for all of the replies and support already!! I am learning so much. I want to learn all I can so that I can take care of my husband and help him through this. He is doing zero research and refuses to look at any information until we see the colorectal surgeon and we know the stage and all that. I am the opposite. I want to learn as much as I can before we see the doctor so that I will half way understand what they are talking about and know what questions to ask. So he just told me to do my research. I think he may be in denial right now about all of this. We were supposed to receive a call from the surgeons office today, but did not. In their defense we are having some major bad weather here so that may have been the reason. So, my husband is calling first thing in the morning. I do have a question though. How fast should we be expecting all of this to move? Like is it going to take a few weeks to get all the information, staging, and scans and a plan? It seems like some people on this board had things move rather quickly and I'm not sure what to expect. Bottom line is, I want to know how bad it really is. I am driving myself crazy with all of the different possibilities. I can't imagine life without my husband. I just wish the doctor that diagnosed it didn't make it seem so bad the other day. Maybe I was just reading way too much into what he said and how he said it, I don't know. Thanks for listening and thanks so much for all of the information and support!
Caregiver to husband age 49
09/08/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/10/17: Laparoscopic LAR surgery
10/19/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV

Basil
Posts: 206
Joined: Thu Mar 16, 2017 12:33 pm

Re: New and husband just diagnosed

Postby Basil » Mon Sep 11, 2017 9:18 pm

Colorectal treatment generally moves more slowly than other diseases. It's generally a slow grower and the data shows there's not a significant correlation with outcome if treatment is done tomorrow or in a few weeks. This causes a great deal of stress to many newly diagnosed because you naturally want to be on the front end and treating as quickly as possible.

The scans are the most important thing, obviously. You need the ct and/or MRI to determine if you are dealing with a localized tumor or one that has already spread. If I were expending my energy, it would be to get those scans asap, so you get some peace of mind or are aware of what you're facing. You obviously want a lower stage but the big point of demarcation is between stages 3 and 4. If stage 3 or lower, you're plan and prognosis are good. It's a different battle with stage 4, although there are many in remisssion for years with that diagnosis.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Basil
Posts: 206
Joined: Thu Mar 16, 2017 12:33 pm

Re: New and husband just diagnosed

Postby Basil » Mon Sep 11, 2017 9:21 pm

And, FYI, I was diagnosed at a major treatment center and went immediately (within the hour) from colonoscopy to ct imaging. You can get the ct quickly - there's nothing magical about it - if you bang on doors loud enough.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Swirdfish
Posts: 267
Joined: Sun Jun 19, 2016 3:57 am

Re: New and husband just diagnosed

Postby Swirdfish » Tue Sep 12, 2017 1:12 am

Focus on getting all your imagery done and staging. This will give you a better idea on how and what to research to then make the best approach. Push for these.

The first couple of weeks is always the worst awaiting a staging result and plan.

Find a colorectal surgeon you are happy with.

Wishing you both well.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New and husband just diagnosed

Postby susie0915 » Tue Sep 12, 2017 8:35 am

I had my colonoscopy on a Thursday. Met with a surgeon the next day. He scheduled a Ct scan that Sunday and endoscopic ultrasound Tuesday. So knowing how much cancer has spread and staging can be done fairly quickly. The surgeon also set up appointments with an oncologist and radiation oncologist. At the same time I was scheduling appointments with different hospital for second opinions. I had to get copies of both tests to take. Getting the scans needed in order to stage should happen fairly quick. I do adivse you to get second opinions as well. I was diagnosed on May 7 and started treatment by the end of the month. That was getting all the tests and getting second opinions. I met with surgeon, oncologist, and radiation oncologist from both hospitals. Most doctors will get you in pretty quickly for consults. Most hospitals have a nurse navigator that can help you set up these appointments.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

alphagam
Posts: 202
Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: New and husband just diagnosed

Postby alphagam » Tue Sep 12, 2017 3:54 pm

My story is a bit different ...woke up from the colonoscopy with the GI telling us I had rectal cancer. Next step was a rectal ultrasound (EUS). Was awake for that. The GI wasn't paying attention the entire time... he diagnosed me with a T3 tumor. Our next step was a second opinion with a Board Certified Colorectal surgeon. He did not believe the EUS findings. Long story short, I REALLY had a polyploid mass with cancer in situ. Colorectal surgeon removed it all with clear margins and I am fine today. If we had gone with the first opinion, I would gave had chemo radiation, surgery for a permanent colostomy and more chemo. Instead, I had outpatient TME, and almost 7 years later am NED. Always get a second opinion. ALWAYS.
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years


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