Newly diagnosed rectal cancer

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jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Newly diagnosed rectal cancer

Postby jmn » Wed Aug 07, 2019 2:38 pm

My GI doctor schedules my CT scans—quicker and much easier than working directly as an outpatient with my local hospital or with a free-standing imaging center.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Newly diagnosed rectal cancer

Postby jmn » Wed Aug 07, 2019 2:49 pm

jmn wrote:My GI doctor schedules my CT scans—quicker and much easier than working directly as an outpatient with my local hospital or with a free-standing imaging center.

CORRECTION: Sorry, I misread the question. My GI doctor schedules my colonoscopies; my MSK oncologist schedules my CT scans.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Thu Aug 08, 2019 2:30 pm

I appreciate you all being there. I feel like I'm being "extra" when I ask so many questions but I'm trying so hard not to drown with all of this & feel so overwhelmed at this point. I know waiting is the hardest part but I can't even begin really waiting until I actually get the next steps done. At least the biopsy is done but I need the CT to get more answers.

I never have been able to speak to the one person in my Primary Care that does the referrals to the heart doctor which I also need to see. I believe my heart racing is anxiety over the rest but who knows. My husband got me an appointment with his doctor & just now the lady in that office decided to do some calling for me since I'm not getting anywhere on my own. There are good people who go above & beyond for their jobs & she made sure I can get in to see him tomorrow.

They said once I get the CT scan done, I will have an appointment back with the GI who did the colonoscopy & he will go over all of the results & tell me who to go to next. I know he mentioned chemo, radiation & surgery but since it's in the rectum, you don't usually do surgery first, is that right? Pretty sure if I'm able to get surgery it will be an automatic permanent colostomy from where the tumor is located. I believe they said the stalk was touching an internal hemorrhoid so it's pretty far down.

I had been trying to go through names on my plan to find a board certified colo-rectal surgeon but maybe I need to be looking at oncologists first? I did try to look at the names but some say medical oncologist or just oncologist. I think I need a radiation oncologist maybe? These will be the first opinion doctors I think. I know we need to get second opinions. I'm not going to be able to go to a cancer center with my insurance so I will have to decide what to do about that.

Does anyone know, if you chose to do out-of-network, would the big cancer centers accept that or could the chemo still be covered? I guess that would all be up to my insurance. I need to study that & figure it out.

I know this is a jumble. Thanks again for listening.

And NHMike, I've been reading your story. Thank you for sharing.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2265
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Thu Aug 08, 2019 5:07 pm

MeAndMine wrote:They said once I get the CT scan done, I will have an appointment back with the GI who did the colonoscopy & he will go over all of the results & tell me who to go to next. I know he mentioned chemo, radiation & surgery but since it's in the rectum, you don't usually do surgery first, is that right? Pretty sure if I'm able to get surgery it will be an automatic permanent colostomy from where the tumor is located. I believe they said the stalk was touching an internal hemorrhoid so it's pretty far down.


The typical course of treatment is radiation + chemo, then surgery, then more chemo. There are some that do a modified order but that may not be an option in your case.

If the distance from the Anal Verge to the tumor is small, then they do a permanent colostomy and the decision isn't yours.

My surgeon told me that there was a 5% chance that I'd have a permanent colostomy but she would make the decision during the surgery so I had no say in the matter.
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

NHMike
Posts: 2265
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Thu Aug 08, 2019 5:11 pm

MeAndMine wrote:I had been trying to go through names on my plan to find a board certified colo-rectal surgeon but maybe I need to be looking at oncologists first? I did try to look at the names but some say medical oncologist or just oncologist. I think I need a radiation oncologist maybe? These will be the first opinion doctors I think. I know we need to get second opinions. I'm not going to be able to go to a cancer center with my insurance so I will have to decide what to do about that.


My GI doc arranged the Oncologist and Radiation Oncologist. He made some suggestions for local surgeons but I went with a surgeon in Boston (an hour away). So it may be that your GI doc refers you to local doctors for oncology and radiation. Some places use the term Radiation Oncologists and some just a Radiation doctor. My local place didn't call him an oncologist - just Radiation. Dana Farber called such people Radiation Oncologists.
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

Punky44
Posts: 359
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly diagnosed rectal cancer

Postby Punky44 » Sat Aug 10, 2019 10:29 pm

I’m sorry you find yourself here and that you are having trouble getting a CT scheduled—our gastro handled the scheduling for ours and it was done three days after the colonoscopy. That three days was an eternity as it was so I can relate to how difficult it must be not to have the answers yet and be in this limbo. I hope you were able to get something on the books since you last posted.

Thinking of you.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

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

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Aug 11, 2019 8:21 am

I haven't posted because I'm in a bad place in my head & can't seem to get myself out. It's really hard right now. Later in the day I can be more positive but nights & mornings are the worst & I spend most of my day in worry. I know it's bad but I don't know how to get out of it so I sit here shaking & waiting.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Newly diagnosed rectal cancer

Postby Rock_Robster » Sun Aug 11, 2019 8:29 am

I completely hear you MeAndMine. For the mornings, I found the best thing I could do was just force myself to get out of the house and do ANYTHING. Even just go and buy a coffee. I never found a good solution though for the nights, I’m afraid.

I know this is of little help now, but I promise it does get better.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Aug 13, 2019 9:46 am

I've been trying to walk to relieve stress and try to build a little stamina. I'm supposed to be doing that stress test on my heart on Friday but didn't realize it was a nuclear stress test with the radiation dye. I'm wondering if that is something I should be doing at this point but then again, they may want to do it anyway if I need surgery.

My treadmill decided now was a good time to quit working. I got in just over 1/4 mile before it sputtered & kind of stopped. I'm not sure what happened. It doesn't want to spin anymore.

I had my CT done this morning. My papers from the colonoscopy said "CT without contrast" but the test when I got there was with contrast. I was glad because I thought without contrast wasn't going to be as thorough but I don't know much about them. She said they should have results to my doctor in two days but I couldn't get an appointment with him until next week to go over everything. I don't think he likes doing things over the phone or by mail.

The biopsy results came in but there's hardly no information there. I thought it would be a complete report, but this one little piece of paper only says:

Pathology Results:
Biopsy Results Precancerous Polyp(s) - and abnormal

Recommendation:
Follow up in the office with your provider
Repeat procedure in 1 year
Keep office visit for further management

At least the CT scan is done. Thanks again for listening.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Newly diagnosed rectal cancer

Postby boxhill » Tue Aug 13, 2019 1:30 pm

CT with contrast is standard of care for CRC, so it's good that they ignored that part of the instructions.

In my experience you don't have to wait until the doctor's appointment to get the CT results. Around here, they are normally read within a couple of hours and transmitted electronically to the requesting MD. I can pick up the report myself at the CT facility as soon as it is sent to the MD, often later that day or the next morning.

I am surprised that someone mentioned at CT *without* contrast. Normally, I'd expect a thoracic, pelvic, and abdominal scan with contrast for a CRC patient, and typically with both injected and swallowed contrasts.

It would be helpful if you would give us some idea of where you are located and what your insurance is if that is going to be an issue in finding the right place to get care. Your doctors should work as a team, ideally.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Tue Aug 13, 2019 2:48 pm

I am surprised that someone mentioned at CT *without* contrast. Normally, I'd expect a thoracic, pelvic, and abdominal scan with contrast for a CRC patient, and typically with both injected and swallowed contrasts.

It would be helpful if you would give us some idea of where you are located and what your insurance is if that is going to be an issue in finding the right place to get care. Your doctors should work as a team, ideally.


The original papers from the GI after colonoscopy said the "without contrast" part but today when they were showing me the payment I needed to make, that paperwork did say abdominal & pelvic & I'm pretty sure I read thoracic too because that was new for me. I didn't get swallowed contrasts though, just injected.

My regular checkup with my primary showed low thyroid. Barely low but just below the lowest number that is acceptable. I believe it was 4.45. The primary didn't give me a copy but they sent it to the cardiologist who looked at them last week & told me the number.

I've got Anthem Blue Cross of Georgia but when I call to make appointments with referrals, they say "Oh, you have pathway-x". The first GI that I called said that it was going to be hard for me to find someone to take that insurance but luckily the next doctor they referred me to was actually my sister's doctor years ago so I knew them.

Something I haven't mentioned is that my sister passed from small bowel cancer in 2017. She had all of her colonoscopy & endoscopy tests run over the years. They always came back clear but when she started having symptoms, they couldn't find what was making her sick. They took out her gall bladder & kept trying to find what was wrong. They said she had asthma & she asked how you can suddenly develop asthma in your 50's. The tests couldn't reach the area of the small bowel that her tumor was located in so by the time they finally diagnosed her, it was Stage IV with mets to her lungs. She ended up getting her treatment at CTCA. The same week that she passed, we found out my husband had bladder cancer. It's been so much these last few years.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Punky44
Posts: 359
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly diagnosed rectal cancer

Postby Punky44 » Tue Aug 13, 2019 9:42 pm

So sorry to hear about your sister and husband. I am glad you got your CT scan and hope you don’t have to wait too long for the results—you will start to feel more in control when you have a plan. Hang in there.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

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

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Aug 17, 2019 10:46 am

I had my heart echo and nuclear stress test done on Friday. At least those are tests that you get the results back during the same visit. It’s so nice not to have to wait!

My heart is fine. My blood pressure was up a little but it was up a lot at the last visit and was probably from me being anxious. He said I don’t need medication and I’m clear for any surgery that I’ll need.

Still waiting on everything else but this hurdle is done.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Newly diagnosed rectal cancer

Postby boxhill » Sat Aug 17, 2019 3:12 pm

Interestingly, I just got a pre-authorization for my next scan, and like the last one it specifies "w/o contrast," although what I actually had was not only with both kinds of contrast, but triphasic. I put it down to some strange coding quirk of AIM Specialty Healthy, the dreadful "utilization management services" company retained by Anthem BC/BS. I hope we don't get a surprise bill.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

MeAndMine
Posts: 115
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Aug 17, 2019 8:22 pm

Wow, that does make you wonder. So far I haven’t gotten any bills in the mail, just what I’ve been paying at doctor or hospital visits. I’m not looking forward to the bills arriving but we will see what shows up! I hope it all goes through like it’s supposed to for everyone.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine


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