Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 07, 2017 8:31 pm

I’m aware of the potential problems. When I joined this forum, a local contacted me and provided advice on how to deal with those problems as he had many of them. I have his comments in email. I hope that mine aren’t as bad but have to be prepared for the worst.

We did discuss a bit of this at the meeting early in October.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 08, 2017 8:08 am

O Stoma Mia wrote:Here is what the BWH FAQ says about their pathology reports:
    Your doctor may want to wait for ALL test results to be completed before contacting you; thus, it may take a week or more for a full battery of results to be available. Pathology tissue biopsies take approximately 48 hours to process and make into glass slides to be reviewed by the pathologist. Additional tests may be necessary on the tissue to make a final diagnosis. From the time of your surgery to the time the results are available to your doctor is usually 5 to 7 days.
    Ref: http://www.brighamandwomens.org/Departments_and_Services/pathology/Patient/FAQ1.aspx
Here is a list of the pathologists there:
.
http://www.brighamandwomens.org/Departments_and_Services/pathology/About-Us/Faculty.aspx


I reread the Discharge Papers (I've reread them several times and seem to discover something new with each reading), and the preliminary path results were available last Thursday (before I was discharged), but the results were placed on hold and the reason given was "Additional Levels Requested". The preliminary results aren't posted on the portal at this time and I'm curious as to what the "Additional Levels Requested" are. I wonder if they ordered Genomic Testing as that could explain the extra time needed. I had Genomic Testing of the Tumor back at diagnosis but it was done informally and it's not in my official medical record anywhere (the pathologist just sent it to me in an email), so B&W may have decided to do one to get more information for mop-up chemo.

I just sent an email to the contact person listed in the discharge papers. I don't think that I mind having another Genomic test as there could be changes in the report (such as additional mutations - though I really hope not).
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 10, 2017 8:50 pm

Image

Went to the gym and did flys, rows, chest press and curls. These were on machines that isolate the exercise to narrow muscle groups. No core was involved. I kept the settings light just to see how I did. It wasn't really satisfying but at least my upper body won't atrophy as much.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

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susie0915
Posts: 425
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 » Sat Nov 11, 2017 9:07 am

Good for you Mike. Even doing light weights will help keep you from losing too much muscle mass. I was in the hospital for 3 1/2 weeks a month after my resection for my blockage and I couldn't believe how much muscle mass I lost during that time. Anything you can do to keep you strong will only help you during chemo.
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 since
surgery to repair blockage. 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

Ellen66
Posts: 2
Joined: Sun Apr 23, 2017 1:26 pm

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

Postby Ellen66 » Sat Nov 11, 2017 4:47 pm

With changing bags for the stoma, I've got a routine. Get all the stuff ready to go on quickly, as soon as you clean, etc. I do it in the morning after having a breakfast of oatmeal! Like they say, oatmeal stays with you, and seems to slow down your digestion. I eat, wait an hour, they do my thing. Works for me. :D

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 14, 2017 3:36 pm

Post-op today. Surgeon removed staples and path report was positive. She suggested Oncology consult with Dana Farber. It strikes me that they didn't need to remove the whole rectum now that they know what they know. But I don't think that they could get the information without removing everything. A bit of a catch-22. I guess removing everything is definitely safer. Hopefully they figure out a way to learn a lot more about the cancer inside you without having to remove everything and do pathology on it. Maybe some day down the road.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

User avatar
susie0915
Posts: 425
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 Nov 14, 2017 6:42 pm

Yeah sometimes you wonder why they take so much. Seems they could leave a little more and get same results. Glad you had a positive appointment.
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 since
surgery to repair blockage. 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

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Nov 14, 2017 7:22 pm

I only got three pages out of nine on the pathology report and it isn't in the portal. I suspect that it isn't made available to me except by the doctor. The doctor printed off the three pages and I took pictures with my phone and I've been transcribing them to iCloud Notes this evening.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

User avatar
susie0915
Posts: 425
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 Nov 14, 2017 8:54 pm

Mine never was in the portal. I went to medical records to get my report.
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 since
surgery to repair blockage. 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

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 15, 2017 11:06 am

Just a little note on the NextGen Tumor Sequencing:

They ran two Assays on my biopsy block. The first Assay analyzes RNA looking for 50+ target genes with fusion transcripts in translocations (sounds like copy errors where a segment is copied to the wrong segment of the copy). The second tests DNA looking for 90+ target variants and that's where they found my KRAS. They apparently do other analysis as they found two other variants that haven't been classified before. They don't know if they have any impact on treatment or what they do. But the two other variants are in their database now so it might be useful down the road if other people get testing and show the same variants.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Nov 15, 2017 11:08 am

I'm working in the office today. I have to check on the status of the permission note (Doctor's office was supposed to send it to the Short-Term Disability company yesterday). I also have to figure out the paycheck situation. I'm guessing that the short-term disability company mails it and that they won't take out a bunch of deductions and things.

Also, Clinical Trial asked for my address - they're sending me a check for doing the clinical trial. I didn't know that beforehand but it appears to be standard procedure.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

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O Stoma Mia
Posts: 871
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Wed Nov 15, 2017 11:47 pm

NHMike wrote:Post-op today. Surgeon removed staples and path report was positive. She suggested Oncology consult with Dana Farber...

When are you going to see an oncologist? Time is running short if you want to start chemo within the optimal time window after surgery.

Are you planning to get your chemo regimen defined at Dana Farber in Boston, then have the chemo sessions themselves implemented at your local hospital there in NH?

If your chosen chemo involves an infusion, are you going to install a port? If so, will the port surgery be done in Boston or at your local hospital there in NH?
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: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Nov 16, 2017 6:58 am

O Stoma Mia wrote:
NHMike wrote:Post-op today. Surgeon removed staples and path report was positive. She suggested Oncology consult with Dana Farber...

When are you going to see an oncologist? Time is running short if you want to start chemo within the optimal time window after surgery.

Are you planning to get your chemo regimen defined at Dana Farber in Boston, then have the chemo sessions themselves implemented at your local hospital there in NH?

If your chosen chemo involves an infusion, are you going to install a port? If so, will the port surgery be done in Boston or at your local hospital there in NH?


My surgeon said that they will have a board meeting to discuss my case but I will call the DFCI Oncologist that I met with back in July and set up an appointment. The surgeon indicated that they would set it up but waffled a bit on it. It's possible that my mop-up is only Xeloda according to the Surgeon but it would be up to the Oncologist as he's the expert on chemo. I had a pretty easy time with Xeloda for neo-adjuvant. If it's only Xeloda, then I could finish chemo at DFCI as I wouldn't have to go there often. There's also a DFCI 30 minutes away in NH that I could go to for blood work and examinations. Or the DFCI Oncologist could work with my local oncologist. The local oncologist could also just manage the Xeloda if he agrees with the DFCI doctor. So the first thing is to talk to the DFCI oncologist to see his recommendation. If it is only Xeloda, then there are several options which should make things pretty easy. If he recommends Oxy, then I need to get the port and then decide on DFCI - NH or my local hospital. My local hospital is ten minutes away from home. It was very convenient when I had to go everyday for radiation treatment but I could go to DCFI-NH if it's only once every two to three weeks.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

NHMike
Posts: 533
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Nov 16, 2017 12:59 pm

We're working on scheduling an appointment pending the oncologist talking with the surgeon. If they've already talked, then the assistant will call me back and schedule the appointment. If not, then we'll have to figure out when they talk and wait until after that. I assume that they have board meetings once a week so I hope that I make it into this week's cycle.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: 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.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 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.
Surgery: 10/30/17 LAR, Temp Ileostomy

User avatar
susie0915
Posts: 425
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 Nov 16, 2017 3:56 pm

I had my surgery 9/9 was suppose to start chemotherapy the 3rd week of October. Since I had my blockage October 7 and was in the hospital for 3 1/2 weeks and had surgery I wasn't able to start chemo until December 7. I don't know if that's too long after surgery, no one ever said anything to be about having to start by a certain time period after my resection. I'm sure the doctor will be sure you begin when necessary.
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 since
surgery to repair blockage. 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


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