Newly diagnosed rectum cancer

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rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Newly diagnosed rectum cancer

Postby rtcasper » Tue Aug 07, 2018 8:02 am

Hi, just had a colonoscopy, found cancerous tumor on Friday, Aug 3. Meeting with an oncologist this Thursday. I've been reading through some of the posts for a few days, and you guys provide a lot of information and support. Thank you. I'll admit, I'm freaking out quite a bit though. Hard to think about anything else, even while working. I pray and hope for the best, but somewhat expect the worse. I can feel the anxiety clawing at me. Have a beautiful wife and two teenage sons and I'm only 43. Just needed a place to vent for a minute. I'll try to keep up the posting on here. Good luck to any of you that read this and are fighting your own battles. It really brings a whole new perspective to life.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Newly diagnosed rectum cancer

Postby Deb m » Tue Aug 07, 2018 8:36 am

Welcome to the board. Not a real fun club to be a member of, but you are correct in that it supplies you with tuns of very useful information and encouragement.

I found that one of the hardest parts of the whole journey is when your first diagnosed. Once you get the whole picture and start treating it, you actually feel better because your "Killing it". I presume you have some scans coming up to be sure it hasn't spread beyond the rectal area? Keep us posted and know that I am a praying person and you along with the others on this board, both patients and caregivers are in my daily rosary!

Hang in there,

deb m

scohow66
Posts: 33
Joined: Fri Apr 07, 2017 9:54 am

Re: Newly diagnosed rectum cancer

Postby scohow66 » Tue Aug 07, 2018 12:52 pm

Hang in there, not easy at first. Get as much info as possible to understand where the tumor is, what stage is it (i.e. TxNxMx), and what options exist from a surgical and chemo/rad standpoint. Make sure you have someone with you at each dr. appt so to provide another set of ears and to take notes. Not easy road, but you can do it. Take it one day at a time and use this board as a resource and community.

Best of luck!
52 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad
Ileostomy reversal 10/2017
LARS

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Newly diagnosed rectum cancer

Postby AppleTree » Tue Aug 07, 2018 9:11 pm

It is very important to have a board certified surgeon do your surgery.

It can be a bumpy road, but this group has always been here for me. It is a goid place for information, support and venting to people who truly do understand what you are going through.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Wed Aug 08, 2018 7:07 am

Thank you for your well wishes and support. One thing I've learned from this group is to definitely seek out a board certified surgeon, so I've already decided that I'll be going with someone from the Cleveland clinic or the James in Columbus. I'm fortunate to be located pretty equally between the two. And I've made sure to start a list of questions to ask and also listing things to help with dealing with the chemo/radiation. I'm very hopeful to work as much as possible through all of this, so fingers crossed.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Newly diagnosed rectum cancer

Postby Caat55 » Wed Aug 08, 2018 10:05 am

rtcasper wrote:Thank you for your well wishes and support. One thing I've learned from this group is to definitely seek out a board certified surgeon, so I've already decided that I'll be going with someone from the Cleveland clinic or the James in Columbus. I'm fortunate to be located pretty equally between the two. And I've made sure to start a list of questions to ask and also listing things to help with dealing with the chemo/radiation. I'm very hopeful to work as much as possible through all of this, so fingers crossed.

Getting a second opinion I think is also good. If they reds are same or similar it's reassuring. If not, it allows you to hone your questions for more refined plan.
Good luck tomorrow. Use this board for support, answers and to plan the steps on the road through our travels.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Newly diagnosed rectum cancer

Postby hawkowl » Wed Aug 08, 2018 10:22 am

Those first few days are so hard...I had so much anxiety and couldn't ever imagine feeling normal again. But it does get easier as soon as you have a plan in place (and a care team that you trust). It is definitely worth seeking additional opinions if you have any doubts or concerns. Hang in there!
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Fri Aug 10, 2018 1:37 pm

Just an update. Visited with my oncologist yesterday, she seems capable. Basically, we just set up blood work, to get my CEA levels, sent in the orders for an MRI and CT scan. Hopefully will get a call and get those done in the next week. She is in with Cleveland clinic, so I made sure to voice that I want a board certified surgeon from there. She referred me to them, so I am also waiting to hear from them, in order to set up a consult. After test results come back, then we'll proceed with the plan of action, based on her consulting with the radiation onc and the surgeon. I've calmed down quite a bit since the initial shock and am ready to get started destroying this thing. It seems to take forever for the gears of medical treatment to get rolling sometimes,so I'm trying not to be too impatient. I'll update when I get new info, and thanks again to everyone here, lifesavers in multiple ways.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Newly diagnosed rectum cancer

Postby SteveNZ » Fri Aug 10, 2018 5:28 pm

Hi rtcasper,
I am about half way through the process of sorting out rectal cancer. Fortunately mine was caught pretty early.
You will be ok. from your signature I see you are like me a Christian who knows the 'boss of all things' who is pretty good, and that really helps.
The good is that you realize what is important in life and what is not.
You are in my prayers.
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Newly diagnosed rectum cancer

Postby tater » Fri Aug 10, 2018 11:15 pm

Once you have a treatment plan things will be better. It seems like you play defense until than and than you get your chance to play offense. My wife was 38 when diagnosed. She had a 7cm mass about 7cm up in her rectum. Your a bit higher which is a very good thing. Along with the MRI and CT consider a PET scan, also get the genetics test done. My wife was a stage four. she is about seven weeks post opt from her reversal surgery. We are currently NED and pray to stay that way.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newly diagnosed rectum cancer

Postby DarknessEmbraced » Sat Aug 11, 2018 8:42 am

Welcome to the board and sorry for your diagnosis!*hugs* I hope you won't have to wait long for more testing and results. It always feels better to have a treatment plan in place. :D
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Newly diagnosed rectum cancer

Postby lakeswim » Sun Aug 12, 2018 3:47 pm

Welcome. I am fairly new too (diagnosis in March) and I'm in my 40's with young teen kids too. The people on this forum know their stuff. It's a steep learning curve and can be overwhelming at times (I often have to take a break from researching) but once you finalize your treatment, you will feel better (in a way). You are fortunate to be close to Cleveland Clinic. Good luck to you!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Newly diagnosed rectum cancer

Postby Atoq » Tue Aug 14, 2018 12:54 am

Sorry for the diagnosis, and welcome to the forum. I was diagnosed one year ago, 45 year old and two kids (7 and 10). One step at time and thinking about how I want my kids to remember me if these were to be my last months, one year has passed and I am cancer free, at least at macroscopic level. Good luck with the scans!

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

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

Re: Newly diagnosed rectum cancer

Postby ocstacy » Tue Aug 14, 2018 3:00 am

'm freaking out quite a bit though. Hard to think about anything else, even while working. I pray and hope for the best, but somewhat expect the worse. I can feel the anxiety clawing at me.


I know exactly what you are feeling. Although I do not have cancer, I am a caregiver of my mother who was DX with 6cm Stage 3 Rectal Cancer. She just had her final surgery which was the reversal ileostomy. I can say this page has given me so many tips, suggestions, tears for support, advice, etc. I don't have time to go to in person support groups cause I have no time. You will see that you will go through up's and down' during your journey. You will be super strong and confident and some days you will be down and sad. It's all a roller coaster. I feel that I am the one who saved my mom's life. She was having such pain in her rectum thinking it was hemmy's. The dr. kept having her get CT Scans, MRI, blood tests, and one stupid thing he didn't make her get was a colonoscopy so I suggested it. BAM, cancer was found! I didn't tell my mom it was cancer until I let my dad know first. I was in tears when the GI dr. pulled me aside while she was still sedated and let me know the bad news. I will never forget that day for the rest of my life. To hear that your loving mother or anyone in your family that has cancer and to be the first person finding out before that actual person finds out is just devastating. I used to work at the cancer center in an amazing hospital in the radiation oncology department and learned about many different types of cancer. Just know, that this is a great support group and we will be here for you. Lastly, I searched high and low for a board-certified colorectal surgeon on the west coast for my mother. I found the best of the best chief surgeon who was able to save her rectum by hand sewing one for her so she wouldn't have a pouch for the rest of her life.
She is still recovering and it will be a long journey. I recommend you look at reviews, talk to people, read Yelp reviews, etc. You want the best. Good luck and sorry for the diagnosis, but early TX is best!
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.

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Wed Aug 22, 2018 12:43 pm

Thanks everyone, for your replies. Just an update. Had my MRI and CT. It would appear as though there is no spread, except to perhaps 1 node. It would also appear as though the tumor is a little father up than initially suggested by my colonoscopy. So, it may become classified as sigmoid. I will meet Dr. Matthew Kalady of the Cleveland Clinic on Monday, my surgeon, and he will make the call on how he would prefer treatment to take place, whether chemo/rad then surgery etc. Or surgery then follow up chemo. I will update occasionally as I go along, just to give any new diagnosed persons a general timeline of how things play out, in my case anyway.

I still keep you all in my thoughts and prayers every night!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED


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