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 Nov 01, 2017 5:36 pm

I started the colonoscopy prep eight hours earlier than expected by stopping eating Saturday night. The trip to Boston would take several hours and I didn't want an accident while driving down or taking the train to Brigham and Women's. Compounding this was the forecast of heavy wind and rain for early Monday morning. So I drove to my mother's home and took the train to a hotel next to Brigham and Women's. The weather was windy and wet Sunday evening. I forgot a lightning cable so I walked about 0.6 miles to Walgreens in the harsh weather and passed by the hospital on the way back. I decided to go in to dry off a little and ask about admitting. I found out where I should go. The lady in Admitting said that there's a huge line of people at 5:30 for 7:30 surgeries. I returned to the hotel room and did the Hibiclens for the day.

One problem with the directions is with the instruction to pour a quarter-size amount onto a washcloth. So I poured out that much as I took it to mean the US monetary coin. It meant a quarter of the bottle which I figured out on the morning of the surgery so I followed the correct directions only once. I kept doing the quarter-sized bits so I got the stuff on me but you're supposed to use a quarter of the bottle in the facecloth and squeeze it into a lather to apply.

I woke up around 3:30 to do the enema (worked very quickly), then the morning Hibiclens, and then drank the ClearFast. It was White Grape flavor and has 200 calories per bottle. Then I walked over. The rain had stopped and the wind had died down. I got there at 5 AM and was asked to sit in the waiting room after they took my name. At 5:15 AM, they opened the doors and a long line of people came in. Many with suitcases. I assume that those folks traveled, perhaps from faraway places. They then called me and I gave them my information and my workout bag. I went back to the waiting room for a few minutes and then they called me and one other person to go to the pre-op area.

They took my clothes and valuables and I was in a bed and getting stuck, poked, checked, etc. I was supposed to start at 7:30 AM but I didn't actually start until 9:45 AM and I believe that some staff didn't make it in on time. The surgeon said hello (her resident gave me most of the information and he had a very good bedside manner) and I was wheeled into the operating room and they put a mask over me and I was out in about a minute. I woke up feeling pretty sore in my back but I was otherwise not feeling any pain.

I had a back injury in my 20s from carrying a weightlifting set up to my apartment and I'm fine if I keep my core strong. The OR table was flat so I think that was the reason for the soreness. I did hit the pain pump three times but there was no improvement for the backache and I learned that some kinds of pain do not respond well to medications used today. It took me a while to figure out that the ache was from my old injury and not the surgery and when I figured it out, I just asked for a towel to place under the curve of my back and that took care of the problem.

Surgery was done at 2 PM and I left recovery around 6 PM. My sister was there with my backpack (computer, charger, and other stuff) and chatted for a while and then went up to the floor as it was ready but they were cleaning the other side of it so I was delayed. I had a ton of stuff attached to me: IV in the left arm, butterfly in the right for blood draws, Foley catheter, Uretal Stents, drainage tube under the stoma, EKG leads and Oxygen. I did not get out of bed until Tuesday morning so I was okay. No real pain as the anesthesia took time to wear off. I didn't have anything to eat on Monday but I had a Ringer's Lactate IV running through.
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: 923
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Fri Nov 03, 2017 3:31 am

Thanks for the update.

When do you expect to have your path report? When do you expect to be discharged?

FYI here are some 2014 statistics on MA hospitals, for various hospital acquired infections
.
https://www.cdc.gov/hai/stateplans/stat ... ns/ma.html

Image

And also the colon cancer surgery scorecard for your hospital:

https://health.usnews.com/best-hospitals/area/ma/brigham-and-womens-hospital-6140215/colon-cancer-surgery
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: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 03, 2017 8:34 am

I expect to go home shortly. I have day logs to post when I get on my Mac which might be tonight. Infection is unlikely as there’s no fever and the pain is inconsistent. I’m going to take the pain meds before leaving to minimize pain on the long trip back.

I don’t know when path comes back but it won’t matter for three weeks.
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).

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Nov 03, 2017 8:39 am

Good luck traveling home! Try not to take so much narcotic pain meds if you can avoid it! You don't want to go through what my husband went through. Keep us posted.
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

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Fri Nov 03, 2017 12:08 pm

Your recovery is going in right direction, thats great.
What is your time frame of starting chemo, my surgeon wanted me to start 2 weeks after, in case of surgery.
Statisticlly its better to start earlier, better chance of positive outcome.

Good luck!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Chemo/rad finished end of January 2017, focus was on lymph nodes
Tumor erased, CCR, negative mri, ct, scope, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

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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 » Fri Nov 03, 2017 12:58 pm

Have a good trip home. Keep walking, but do rest as well. I was suppose to start chemo a month after surgery. Unfortunately, I had a blockage and was back in the hospital the week before my start date. 3 1/2 weeks and a second surgery along with c-diff after. Ugh. Wasn't able to start until 3 months after surgery. Hopefully, it wasn't less effective.
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

tarheelmom
Posts: 163
Joined: Mon Mar 07, 2016 5:55 pm

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

Postby tarheelmom » Fri Nov 03, 2017 1:29 pm

Have a safe trip home. I forgot about the heparin shots. I only had them in the hospital. I do remember a nurse asking me if I "wanted" the shot so I asked the surgeon if they were optional. The surgeon said once I went home, I would be moving around so much that the threat of blood clots was super low, but he did want me to have them in the hospital. They created quite I bit of bruising.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 03, 2017 1:56 pm

I didn't take the Oxy and there was no pain getting to the car nor on the ride home nor at home. I'm sitting at my desk on a big, multimonitor system thinking of doing some work. But I have to go to the pharmacy in the near-term to get a few things.
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: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Nov 03, 2017 1:58 pm

mozart13 wrote:Your recovery is going in right direction, thats great.
What is your time frame of starting chemo, my surgeon wanted me to start 2 weeks after, in case of surgery.
Statisticlly its better to start earlier, better chance of positive outcome.

Good luck!


I will see the surgeon on November 14 so 11 days from now. I think that she will have the pathology report by then which should provide direction on the post-surgical chemo. Then I'll have to do coordination with my oncologist.
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: 923
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sat Nov 04, 2017 7:10 am

NHMike wrote:... I will see the surgeon on November 14 so 11 days from now. I think that she will have the pathology report by then which should provide direction on the post-surgical chemo...

Is there any chance that the path report will be posted to your hospital portal so that you can download it and review it before Nov.14 ?
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

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susie0915
Posts: 551
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sat Nov 04, 2017 7:44 am

My pathology report was never posted to my portal. I had to get from the medical records department. I thought it was strange, because everything else has been posted in a timely manner.
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: 279
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 » Sat Nov 04, 2017 7:49 am

susie0915 wrote:My pathology report was never posted to my portal. I had to get from the medical records department. I thought it was strange, because everything else has been posted in a timely manner.


Same here. My surgeon called me with the results, but it was never posted to my portal. I asked the PA at my oncologist's office for a copy.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
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 w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ 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
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

rockhound
Posts: 55
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Sat Nov 04, 2017 9:33 am

Aqx99 wrote:
susie0915 wrote:My pathology report was never posted to my portal. I had to get from the medical records department. I thought it was strange, because everything else has been posted in a timely manner.


Same here. My surgeon called me with the results, but it was never posted to my portal. I asked the PA at my oncologist's office for a copy.


Mine was posted, but like a month later- after I had to get the results from my oncologist in a post-op visit...
Last edited by rockhound on Sat Nov 04, 2017 9:34 am, edited 1 time in total.
42 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-H
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 - Clear CT

rockhound
Posts: 55
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Sat Nov 04, 2017 9:33 am

rockhound wrote:
Aqx99 wrote:
susie0915 wrote:My pathology report was never posted to my portal. I had to get from the medical records department. I thought it was strange, because everything else has been posted in a timely manner.


Same here. My surgeon called me with the results, but it was never posted to my portal. I asked the PA at my oncologist's office for a copy.


Mine was posted, but like a month later- after I had to get the results from my oncologist in a post-op visit...
42 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-H
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 - Clear CT

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Nov 04, 2017 4:45 pm

O Stoma Mia wrote:
NHMike wrote:... I will see the surgeon on November 14 so 11 days from now. I think that she will have the pathology report by then which should provide direction on the post-surgical chemo...

Is there any chance that the path report will be posted to your hospital portal so that you can download it and review it before Nov.14 ?


Yes.

It seems that the standard practice is for a Doctor's visit to discuss the findings with the patient. I think that the patient has access to it the same time the doctor does but I was ignoring the notifications in the past. The doctor gave me the information on the first MRI and I didn't write down all the details and there were far more details in the report than she gave me. I only found the report over a month later and had all of the information that's routinely discussed here. I am watching for it - though I'm expecting FOLFOX or something similar for mop-up.
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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