Rectal cancer (Stage 3A) diagnosed late June 2017

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Sep 06, 2017 11:10 am

Today was the first of the last three chemoradiation days. They took some pictures which a doctor had to verify and then they did the radiation treatment. It took so long that my arms fell asleep. The beam was narrower and I think more intense.

I sent a referral request to the surgeon's office to schedule the MRI yesterday but I didn't hear back so I called the office today and was scheduled for an MRI at 6:30 AM so I will need to leave around 4:30 AM to get there and park. I verified that it needs to be at least a full week between the radiation and the MRI and this is a full week minus an hour. I still have the question as to how they know that the cancer hasn't spread to other areas during the chemoradiation. I guess that I will need to ask the Oncologist this question unless someone here knows.
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

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Sep 06, 2017 12:50 pm

My surgeon scheduled a sigmoidoscopy about 2 weeks after I finished chemoradiation. It was then he told me all that was left was scar tissue and I may not need chemo after surgery. My oncologist ordered a pet scan about 5-6 weeks after chemoradiation and it showed no evidence of cancer especially in the distal rectal area, which is where the original tumor was located.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Sep 06, 2017 1:15 pm

susie0915 wrote:My surgeon scheduled a sigmoidoscopy about 2 weeks after I finished chemoradiation. It was then he told me all that was left was scar tissue and I may not need chemo after surgery. My oncologist ordered a pet scan about 5-6 weeks after chemoradiation and it showed no evidence of cancer especially in the distal rectal area, which is where the original tumor was located.


I think that those are both good and my surgeon likes to use MRIs but my question is about spread to the liver which is usually the first place it spreads if it spreads.
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

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Sep 06, 2017 1:48 pm

Won't the MRI show if there are any spots on the liver? I think my doctor was using the pet scan to see if any other areas were affected. My ct scan and endoscopic ultrasound were used prior to treatment to see if other organs or lymph nodes were affected.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby veckon » Wed Sep 06, 2017 1:51 pm

NHMike wrote:
susie0915 wrote:My surgeon scheduled a sigmoidoscopy about 2 weeks after I finished chemoradiation. It was then he told me all that was left was scar tissue and I may not need chemo after surgery. My oncologist ordered a pet scan about 5-6 weeks after chemoradiation and it showed no evidence of cancer especially in the distal rectal area, which is where the original tumor was located.


I think that those are both good and my surgeon likes to use MRIs but my question is about spread to the liver which is usually the first place it spreads if it spreads.


What is the question?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Sep 06, 2017 2:02 pm

veckon wrote:
NHMike wrote:
susie0915 wrote:My surgeon scheduled a sigmoidoscopy about 2 weeks after I finished chemoradiation. It was then he told me all that was left was scar tissue and I may not need chemo after surgery. My oncologist ordered a pet scan about 5-6 weeks after chemoradiation and it showed no evidence of cancer especially in the distal rectal area, which is where the original tumor was located.


I think that those are both good and my surgeon likes to use MRIs but my question is about spread to the liver which is usually the first place it spreads if it spreads.


What is the question?


You're 3A, B, C and you go on chemo and radiation. What if cancer spreads to the liver before you're on chemo or during chemo or afterwards? Is there a standard check for that or is it just assumed that it spreads to slowly for that to happen?
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

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby veckon » Wed Sep 06, 2017 2:16 pm

They will look for suspicious features on other organs each time you get a CT. I am not sure what the protocol is if you do not have any suspicious features on distant organs yet, but I know that every CT is a long term trade off because of the radiation dose. When suspicious features are found, higher resolution or specific scans may be employed to add more evidence in either direction. They showed me my PET scan on a really cool display; the suspicious features on the liver light up if they metabolize the irradiated sugar water they inject you with.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Sep 06, 2017 2:27 pm

veckon wrote:They will look for suspicious features on other organs each time you get a CT. I am not sure what the protocol is if you do not have any suspicious features on distant organs yet, but I know that every CT is a long term trade off because of the radiation dose. When suspicious features are found, higher resolution or specific scans may be employed to add more evidence in either direction. They showed me my PET scan on a really cool display; the suspicious features on the liver light up if they metabolize the irradiated sugar water they inject you with.


I will ask the Oncologist what the followup scans are planned when I meet with him next Monday.

Thanks for your response. They already looked for spread in earlier scans and didn't find any.
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

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby rockhound » Wed Sep 06, 2017 2:39 pm

susie0915 wrote:Rockhound,
Good Luck with your reversal. I'm sure all will go well.


thanks! am looking forward to it actually... and have been following the reversal discussions as well.
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Wed Sep 06, 2017 3:32 pm

I'm sure the drs will do either mri,ct, or pet scan to be sure there is still no spread to other organs. Surgeon may want to look at original tumor to see how much it shrunk or if it is gone. I know they wait at least a couple weeks since I think the radiation continues to work a few weeks after completion. Keep us posted.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Sep 07, 2017 5:51 am

I was feeling good until going to the bathroom a few times yesterday and the pain put me into fasting mode. I did eat 1,000 calories yesterday but I didn't feel like doing it. This radiation stuff can knock you for a loop at any time and derail your plans. I had a home maintenance problem to deal with too (rain leak with a door) and fortunately caulking it on Tuesday and then adding duct tape to it last night in the pouring rain fixed it for now. I may have to change my plans for today a bit due to having a hard time after eating anything due to gas. Only two more treatments to go but this stuff will linger for two weeks.
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

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Thu Sep 07, 2017 7:47 am

Hang in there. Next week you will begin to feel better. I know it's tough at the end. :(
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Thu Sep 07, 2017 8:39 am

Hi Mike,

So sorry to hear that you're having such a hard time. Since my cancer is colon, no radiation for me. I can't begin to imagine the pain you're going through. Wishing you strength in the next few weeks and good results once you get past this!

Hope the weather stays decent for you, these hurricanes are getting scary!

Take Care,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

ab123
Posts: 124
Joined: Tue May 21, 2013 12:25 pm
Location: Boston

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby ab123 » Thu Sep 07, 2017 10:39 am

Hi Mike,

I don't check the board here much anymore - almost 5 years out from 3C rectal - and NED ever since. I was also treated at BWH and DFCI - and I found the team excellent. I did what sounds like the exact same chemorad schedule as you at BWH (down on the LL2 with the Varian Trubeam - if they still have those machines). The surgical team is extremely good and experienced at this surgery - I had a great result with "sphinter sparing" with a very low tumor. Today I have near normal function (just a little more frequent is all).

Good luck and you're in very good hands!

-Andrew
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Sep 07, 2017 5:59 pm

ab123 wrote:Hi Mike,

I don't check the board here much anymore - almost 5 years out from 3C rectal - and NED ever since. I was also treated at BWH and DFCI - and I found the team excellent. I did what sounds like the exact same chemorad schedule as you at BWH (down on the LL2 with the Varian Trubeam - if they still have those machines). The surgical team is extremely good and experienced at this surgery - I had a great result with "sphinter sparing" with a very low tumor. Today I have near normal function (just a little more frequent is all).

Good luck and you're in very good hands!

-Andrew


Thanks for the vote of confidence.

The surgeon's office called back and wants to reschedule the MRI for four weeks after the radiation so there was a misunderstanding back two months ago. I will call them back tomorrow to reschedule the MRI. She wants an appointment a few days after the MRI to discuss the surgery too.

I met with the radiologist today and the nurse offered me stuff for the pain but I declined. It hurts a lot but there's a fair amount of distance to the point where I can't take it any further. We talked about nutrition as well and she suggested that I contact a Dr. Fuschs at DFCI - he does labs and clinical and is an expert at the nutrition stuff. She also suggested that I contact the person that my sister recommended. She has a lot of GI cancer in her family.

I hit tennis balls for 35 minutes and was worn out from that. I have video and will try to edit and post it. So basically cutting down how much I eat cuts down the number of times I need to go to the bathroom and decreases the amount of time that I'm in pain so it's a management technique. I just need to ensure that I'm getting sufficient nutrition. The knowledge that I have four weeks to myself might be somewhat liberating. It might be a time to look into the nutritional stuff and certainly a time to build back my strength and stamina in the gym. That is assuming the GI tract cooperates.

I am planning on working in the office tomorrow, at least for the morning. It would be nice to get back to a bit of normalcy. I plan to go into the office regularly starting next week.

Thanks all for the well-wishes.
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


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