I am so worried.

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tater
Posts: 71
Joined: Wed Jul 19, 2017 5:53 pm

Re: I am so worried.

Postby tater » Wed Oct 03, 2018 2:35 pm

Punky you are getting some great responses here on this blog. It is hard to do but you have to let Dr. Google take you down. I know you want to be informed and that is good but some of those numbers are out of date. I did not want my wife to be stage IV and fought with the doctors to tell be that she was a stage 3 but the fact is it is just a number. Their are a lot of people on this blog and walking on this earth that have dx of stage IV and have beat the beast. My wife had a 7cm mass about 7 cm up her rectum. We originally thought that she was a stage 3, however after the PET and a ultrasound on her uterus it was determined that she was a 4. Her tumor grew through her rectum and had started to grow into her uterus. Later they did a biopsy on her external iliac node and it was RC cancer which made her a 4 also. You need to get additional test done to determine if their has been spread, but as it has been stated the treatment right now will be the same, chemo with radiation, surgery than more chemo. You want to know if their is spread so the radiation oncologist can determine the extent of the radiation in the pelvic area.
This will sound weird, but you will begin to feel better once you have a plan and treatments begin. You feel like you are finally playing offense and not defense. Treatments can be hard so get prepared as the caregiver. One thing though as a caregiver you will need to find sometime to get away from it, even if its an hour a day so you can relax and rest so you can get back into the game and help your mother out.
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 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018
Reversal Surgery 6/26/18

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

Re: I am so worried.

Postby Punky44 » Wed Oct 03, 2018 3:00 pm

Thank you again tater (I replied to your PM before I even saw this.)

I want to be there for my mom every step of the way and I just pray I am strong enough to do so because right now I feel just completely shattered. I am scared for what awaits in the future.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

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

Re: I am so worried.

Postby Punky44 » Wed Oct 03, 2018 9:57 pm

Biopsy confirmed cancer. They clarified it’s rectalsigmoid—does this get treated like a rectal cancer or like a colon cancer? Thanks to all if you I’ve already located a board certified surgeon and the referral has been sent. My mom’s CT scan is tomorrow. I pray so hard we don’t see that it has spread. I also was told by the GI doc that I should have a colonoscopy due to my occasional bleeding issues that I’ve just dismissed as hemmroids. I can’t even fathom the thought of us both having this. All I can think about besides my mom is my kids. I am a wreck.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

zephyr
Posts: 123
Joined: Thu Aug 18, 2016 7:31 am

Re: I am so worried.

Postby zephyr » Thu Oct 04, 2018 5:48 am

Don’t get ahead of the data unless you want a fast trip down the rabbit hole. This will be a long process and you’re going to burn out at the rate you’re going: this is a marathon not a sprint. I know it’s hard ... but try. And as someone else said, breathe.
Jun-2016 CRC Surgery
Jul-2016 Stage 4, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza; beg in Oct-2017, receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery
Oct-18 Recovering from YAG laser surgeries (Germany) on R and L lungs, 11 mets removed

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

Re: I am so worried.

Postby Punky44 » Fri Oct 05, 2018 4:45 pm

We got the CT scan results today and they were CLEAR! The gastro said he is “cautiously optimistic” this isn’t stage IV because of that but reiterated the staging will take place after surgery.

We now have referrals to both University of Iowa and Mayo in Rochester, both with board certified surgeons (bc there aren’t any in our area.) We have been told the university can take some time to process a referral but also that Mayo repeats all the tests so we are trying to discern who to go to, but the current thinking is—whoever contacts us first? I know insurance can be weird with “second opinions” so we have to make a choice before going to either.

One day at a time but this is good. Praise God.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

zephyr
Posts: 123
Joined: Thu Aug 18, 2016 7:31 am

Re: I am so worried.

Postby zephyr » Sat Oct 06, 2018 12:40 am

If given the choice, I would go to Mayo. But that’s just me.
Jun-2016 CRC Surgery
Jul-2016 Stage 4, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza; beg in Oct-2017, receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery
Oct-18 Recovering from YAG laser surgeries (Germany) on R and L lungs, 11 mets removed

DarknessEmbraced
Posts: 3126
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I am so worried.

Postby DarknessEmbraced » Sun Oct 07, 2018 7:34 am

I'm sorry for your mother's diagnosis!*hugs* My cancer was in the rectosigmoid and was treated as colon cancer. I'm glad your mother's CT scan was clear. I was stage 2a in 2014. Chemo wasn't needed and I have been in remission since surgery. I hope everything goes well for your mother!*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

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

Re: I am so worried.

Postby Punky44 » Mon Oct 08, 2018 1:14 am

Thank you again to everyone who replied with your stories and words of encouragement. It has been so informative and helpful for me during this whirlwind.

Another question as I lay in bed...

Would local lymph node involvement be able to be detected on a CT? Or just distant spread?
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

sandkeeper
Posts: 8
Joined: Tue Dec 19, 2017 4:58 am
Location: London, UK

Re: I am so worried.

Postby sandkeeper » Mon Oct 08, 2018 10:23 am

Punky44 wrote:Thank you again to everyone who replied with your stories and words of encouragement. It has been so informative and helpful for me during this whirlwind.

Another question as I lay in bed...

Would local lymph node involvement be able to be detected on a CT? Or just distant spread?


I don't know enough to say that they would always show, but I had enlarged lymph nodes on my initial CT (and I was also a rectosigmoid treated as colon). The surgeon said they may be cancerous or just reactive. After surgery they found no lymph involvement. As a fellow worrier, I know exactly what you're going through, but please try not draw any conclusions from the presence/absence of these.
31 year old male, dx Oct 17
Staged IIA post sigmoid colectomy
T3b N0 M0
Oct 18: NED for now
CEA: always 1

Gravelyguy
Posts: 39
Joined: Thu Jul 05, 2018 6:03 pm

Re: I am so worried.

Postby Gravelyguy » Mon Oct 08, 2018 10:53 am

I had an enlarged local lymph node that showed up on the initial CT and was found to be cancerous after surgery. Another vote for Mayo. They have been nothing but fantastic for me!

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
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me

crikklekay
Posts: 56
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: I am so worried.

Postby crikklekay » Mon Oct 08, 2018 11:36 am

When it came to my husband they didn't know if there was lymph node involvement until after the surgery, then they were able to test all the lymph nodes removed and see how many had been affected by cancer. I'm not sure if they show up on a CT scan unless they are swollen or otherwise have changed size/shape?
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

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

Re: I am so worried.

Postby Punky44 » Tue Oct 09, 2018 7:04 pm

University of Iowa Hospital was able to get us into a consult with a board certified surgeon today—she reviewed the CT and did a scope herself and is leaning toward treating this as rectal cancer vs colon cancer (it is rectosigmoid in location, but she said she could actually feel it during the exam).

She also had my mom do an MRI so they can get an idea of the T stage (I’m assuming this is a special step with rectal cancer since you can’t go straight to surgery?)

She said once the MRI results are back, it will go in front of a board of board certified colorectal surgeons, oncologists and radiologists meeting this Thursday to review and come up with a plan. From my understanding, the plan will likely be the standard 5.5 weeks of chemo/radiation, 8-10 week break, surgery, then chemo. The exceptions would be if it barely grew through the wall at all, she said that could be surgically removed without the pre-chemo/radiation, or if the board somehow felt it was more “colon” in nature (unlikely.)

Questions for you guys:
1. If it is rectal cancer, it seems surgery is 4 months out—is that pretty standard? I’m so nervous about it spreading during that time, but the doctor said the chemo/radiation would be fighting to do the opposite.

2. What is involved with daily radiation? We have the option of doing it at the hospital (an hour away) or local. Is where you do your radiation as important as where you would do a surgery?

3. Would an MRI show lymph involvement? I am wondering if in theory, if you did have lymph involvement but you did chemo/radiation first, how would one know if there ever was lymph involvement to properly stage?

If you pray, please pray specifically for my mom’s MRI to come back showing a low T stage and no lymph involvement.

Thank you.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

rtcasper
Posts: 35
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: I am so worried.

Postby rtcasper » Tue Oct 09, 2018 8:50 pm

Hi Punky,

Yes, that seems to be the standard procedure. Mine was right at the verge between rectal and sigmoid colon, so I think they came to a compromise and just gave me 5 days of radiation before surgery. Yes, the mri would show potential lymph node involvement. Mine showed 1 node that was potentially involved, and I think just to be on the safe side,they classified it as such, but my surgery results showed no lymph nodes were affected. Also, in regards to radiation, I would recommend doing that close to home. Personally, I dont see the point in traveling for that, seems like any decent hospital/center can do that effectively. The first appointment is about 45 mins, so they can get her set up and tattooed, and her subsequent appoints will literally only be about 20 mins, but everyday.
The actual radiation only takes about 5 mins,very similar to getting an x ray.

Like everyone on this board and anyone battling this disease, I'm praying for you and her. Best wishes.

Ryan
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
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

heiders33
Posts: 284
Joined: Sat Nov 04, 2017 11:08 am

Re: I am so worried.

Postby heiders33 » Wed Oct 10, 2018 5:40 am

Punky44 wrote:

Questions for you guys:
1. If it is rectal cancer, it seems surgery is 4 months out—is that pretty standard? I’m so nervous about it spreading during that time, but the doctor said the chemo/radiation would be fighting to do the opposite.


Yes, 4 months is pretty standard. I started radiation in June and had surgery in September. I too wanted to just get the tumor out, but my doctors told me it needed to shrink from chemo/radiation first. Don’t worry about spread during this time; rather, the chemo/rad should shrink the tumor to nothing or almost nothing.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Phillypatient
Posts: 16
Joined: Sun Aug 05, 2018 11:28 am

Re: I am so worried.

Postby Phillypatient » Wed Oct 10, 2018 7:12 am

1. If it is rectal cancer, it seems surgery is 4 months out—is that pretty standard? I’m so nervous about it spreading during that time, but the doctor said the chemo/radiation would be fighting to do the opposite.

That’s pretty standard. I would also note that some people have a complete response to chemo rad and some centers, including MAYO, are employing a watch and wait method. There is some chance surgery can be avoided but only in select cases. Search
“Watch and wait” or “Habr-Gama” in this forum and you can find some threads and also some individuals you have chosen this path.

Good luck and breathe. It is a marathon
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17


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