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 » Fri Oct 06, 2017 7:01 pm

Bloodwork indicated that Vitamin D3 is now up to 25 from 20. Normal range is 30-39. So more work to do. Oncologist suggested going up to 7K iu/day.

Had the pre-surgical MRI today at B&W. Taking some time off from work (about ten days) and the first half is in Boston for the MRI and meeting with the surgeon next week. Ran/walked ten miles per day yesterday and today. Boston is a walking city.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Oct 10, 2017 10:58 am

Met with the surgeon this morning and she said that the MRI looks good (she also did a digital exam). She said that the odds of a permanent is about 10%.

I was given the choices of Oct 16 and Oct 30 for surgery and Oct 16 was too soon (we're traveling on vacation and there's prep stuff to do). The surgeon said that either date would be fine.

They will do a urethral stent as there's risk of damage there because of where it's located.

They do a pre-op exam one week before the surgery - I guess that's not a bad idea but it means another trip into Boston.

There's a two-day prep, probably similar to a colonoscopy prep.

I'm following three others on another cancer board - two of them have surgery today and one last week and I'm following their posts closely to see what to expect. It seems like a lot of things are similar and some things vary.

There is a two-week post op meeting with the surgeon (not sure whether there's an exam). And she mentioned the reversal. There's lots of posts on this forum about reversals and I'll need to go through them down the road.

My Garmin Forerunner 630 says that I've walked or run 55 miles in the past week and I've got the blisters to prove it. So activity is not a problem at this time. So counting down the day.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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susie0915
Posts: 531
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 » Tue Oct 10, 2017 12:05 pm

Sounds like you're doing and feeling well. That's good news that you prob won't need a permanent colostomy. The temp ileostomy
wasn't too bad. I only had mine for four weeks as the blockage I had caused me to have surgery, and the surgeon chose to reverse then
instead of having go back in again. I was happy about that, but it did make it more difficult with chemo. I did have diarrhea issues. So
may have been better if I had the ileostomy during treatment.

Enjoy your upcoming vacation, and yes my prep was basically like a colonoscopy prep. Keep us updated
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, 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
11/17 CEA<.5

Aqx99
Posts: 275
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Tue Oct 10, 2017 12:26 pm

My two week post-op visit with my surgeon was more about checking on the ileostomy, the incision sites and removing the drain, than checking my anastomosis. I didn't have a rectal exam until about 2 months after my surgery.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/18ish Reversal

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Oct 11, 2017 5:47 am

Thanks for your comments Susie and Anne. I say this a lot but it's always good to know what's coming.

On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Oct 13, 2017 7:39 am

Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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susie0915
Posts: 531
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 » Fri Oct 13, 2017 9:34 am

It does work. All that was left of my tumor was scar tissue. But there were still minimal residual cancer cells in the pathology after surgery, but still impressive. I'm sure your improvement will help the surgeon get clean margins, help with surgery.
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, 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
11/17 CEA<.5

mpbser
Posts: 309
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Oct 13, 2017 9:41 am

Those are great results. Congrats!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Aqx99
Posts: 275
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Fri Oct 13, 2017 3:23 pm

It does work well. My tumor was still there, but was much smaller. My surgeon said he could see scar tissue where the tumor had been and he was able to wiggle the tumor around, which he couldn't do before.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/18ish Reversal

prs
Posts: 105
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Mon Oct 16, 2017 12:08 pm

NHMike wrote:Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.

Mike, I understand tumors can continue shrinking for up to twelve weeks after radiation treatment ends. Are you not tempted to wait another few weeks to see if your tumor gets even smaller?

Presumably the smaller the tumor, the better the surgical prognosis.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Oct 16, 2017 6:17 pm

prs wrote:
NHMike wrote:Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.

Mike, I understand tumors can continue shrinking for up to twelve weeks after radiation treatment ends. Are you not tempted to wait another few weeks to see if your tumor gets even smaller?

Presumably the smaller the tumor, the better the surgical prognosis.


I think that the protocol at this hospital is 6-8 weeks and I'm right in the middle at 7. The surgeon indicated that things look pretty good after four weeks so hopefully the look even better at seven. I'm facing the surgery with some trepidation of course and part of human nature is to put off things that are unpleasant, and, believe me, it will be unpleasant from the descriptions of the levels of pain in the days after surgery that I've seen over the past few days. But I really would like to get this thing out of me and get through with the mop-up chemo and then get on with my life (though I realize that I'll get scanned and stabbed and probed on a regular basis).

I think that the research is pointing to longer waits and one of the doctors that I spoke with (maybe the Dana Farber Oncologist) talked about this but it doesn't look like research has translated into practice at Dana Farber/Brigham and Womens yet. We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.

One other factor is weather in my area. The risk of snow and ice storms increases as we approach December and I will have some challenging logistical issues in recovery and I'd rather the surgery and recovery be done well before the first snowstorm of the season.

So is it tempting? Of course the idea is interesting. But many that I know did go with the standard 6-8 weeks and their results seem to be pretty good. Everyone is different, of course.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Lee
Posts: 5287
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Mon Oct 16, 2017 7:56 pm

NHMike wrote: . . . We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.


That is such a true statement. When I was diagnosed over 13 yrs ago, I was given 30% to 50% of being alive in 5 yrs depending upon who I talked to. Believe me, a lot of advancements in the past decade especially the testing they do on the tumors now. Immune therapy I believe is the next big game changer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer via exploratory surgery (age 46). No colonoscopies then. He was healthy except for his weight loss, active and no pain that I am aware of. 6 months later he was dead. So yes, a lot of advancements in the cancer field in the past 50 years.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Oct 16, 2017 9:05 pm

Lee wrote:
NHMike wrote: . . . We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.


That is such a true statement. When I was diagnosed over 13 yrs ago, I was given 30% to 50% of being alive in 5 yrs depending upon who I talked to. Believe me, a lot of advancements in the past decade especially the testing they do on the tumors now. Immune therapy I believe is the next big game changer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer via exploratory surgery (age 46). No colonoscopies then. He was healthy except for his weight loss, active and no pain that I am aware of. 6 months later he was dead. So yes, a lot of advancements in the cancer field in the past 50 years.

Good luck,

Lee


I love your signature.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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O Stoma Mia
Posts: 910
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Mon Oct 16, 2017 9:59 pm

NHMike wrote:... On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.

There's another thing that you should probably check. This is whether your PM Inbox has a "Delete Marked" option, since you will eventually have to delete some old PM messages so that there is room for new ones to arrive. If you don't start deleting old messages in your Inbox and Sent box then your PM system will eventually lock up to the point where nothing can be done.

When you are checking your messages you should always look at the notice at the top to see how full your mailbox is, e.g.,
    Folder is 1% full (1 out of 100 messages stored)

If you don't have a Delete option in your Inbox you should let administrator know so that the problem can be fixed.
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

NHMike
Posts: 665
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Oct 17, 2017 6:27 am

O Stoma Mia wrote:
NHMike wrote:... On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.

There's another thing that you should probably check. This is whether your PM Inbox has a "Delete Marked" option, since you will eventually have to delete some old PM messages so that there is room for new ones to arrive. If you don't start deleting old messages in your Inbox and Sent box then your PM system will eventually lock up to the point where nothing can be done.

When you are checking your messages you should always look at the notice at the top to see how full your mailbox is, e.g.,
    Folder is 1% full (1 out of 100 messages stored)

If you don't have a Delete option in your Inbox you should let administrator know so that the problem can be fixed.


I was talking about emails on posts, not the private stuff. The emails stopping flowing again so I have to go through the notification section. Email is handy as I get a notification instead of going through a list.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: 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
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 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
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).


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