New Here and Going Under the Knife 9/4

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MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Mon Aug 26, 2019 9:06 am

Happy to say I've made some progress and a few decisions. Still having my surgery on 9/4 but I've secured an oncologist at MSK. They assured me I would not be able to have surgery before 10/15 so..... My CT scans show the cancer has not spread. Once I called MSK they ordered copies of all my test, pathology samples and I will be there one week after surgery. They will coordinate with my local oncologist and provide the second opinion and I will just transition there if I choose too. And I will if I need to follow a treatment plan or their opinions differ. That's an amazing hospital. I have been unable to get my radiology from the colonoscopy and yet they called and got it the same day and I'm not even a patient officially yet.

The CT results were somewhat of a relief but my surgeon said the bottom line is the actual result of the colectomy. So I'm still anticipating that test are not always 100% accurate.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

boxhill
Posts: 392
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here and Going Under the Knife 9/4

Postby boxhill » Mon Aug 26, 2019 9:23 am

I don't know what hospital you are slated to have your surgery in, but for the record my father was treated at Norwalk Hospital, and to say I was unimpressed would be an understatement. I'm sure they have competent doctors, but the way that the ward care was organized and carried out was definitely sub par. A huge contrast to my own experience at Maine Med, where the nursing staff and care is fabulous.

And Norwalk had terrible food. :)
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

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Mon Aug 26, 2019 9:28 am

Orange Regional Medical Center
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

DarknessEmbraced
Posts: 3369
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Here and Going Under the Knife 9/4

Postby DarknessEmbraced » Tue Aug 27, 2019 12:27 pm

I'm sorry for your diagnosis!*hugs* I had an open left hemicolectomy and don't know about recovery from surgery on the right. I had an epidural put in while in the OR which helped with pain. I have read that recovery from laparoscopic surgery is quicker than with open surgery. I was in the hospital for 6 or 7 days. Walking as soon as possible after surgery helps get the bowels working and can help with gas. I had the nurses give me a heated blanket(thick sheet really) for my stomach at night which helped with cramping. Hugging a pillow when coughing or sneezing helped it not pull on the incision as much. At home my boyfriend put everything where I could reach it without bending. Loose pants really helped. I had pillows on either side of me so that I wouldn't roll over onto my stomach or side. I hope your surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19

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Jacques
Posts: 535
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Wed Aug 28, 2019 2:05 pm

MistyBlu wrote:Orange Regional Medical Center

Orange Regional Medical Center

boxhill
Posts: 392
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here and Going Under the Knife 9/4

Postby boxhill » Wed Sep 04, 2019 10:32 am

Mistyblu, thinking of you today. Hope that all goes well.
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

User avatar
Zackattack
Posts: 40
Joined: Mon Jul 15, 2019 4:28 pm

Re: New Here and Going Under the Knife 9/4

Postby Zackattack » Wed Sep 04, 2019 12:28 pm

Same, wishing you the best of recoveries and take it hour by hour. A little blood in your stool can be normal, so don't freak out. Try and get walking asap, even day 1 if they recommend it. Try to get off narcotics and switch to Tylenol/ibuprofen if they allow it. It should help the bowels get back to normal function.

I always ran constipated or infrequent all of my life. They will probably have you on a liquid diet for a little bit and colaise kept things soft and moving for me. You're not supposed to push so gravity will do the work. Now I'm using the bathroom 4-5 times a day so far and it's actually quite nice. Your new normal may be better than ever! Stay positive is what everyone keeps/kept telling me and it's hard sometimes but realize you caught it and are dealing with it. I had robotic lar and any questions or concerns, I'm always around.
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Thu Sep 05, 2019 12:52 pm

Thank you all for thinking about me. The surgery went well yesterday. I am not in any pain. They have me on Tylenol 1000 and that's it. No BM yet so I'm not sure what I'm going home. Doc say it doesn't look like it spread and no lymph nodes. But we'll wait for pathology. The ONC is waiting as well. No plan for future treatment etc until pathology comes back. :D
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

User avatar
Jacques
Posts: 535
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New Here and Going Under the Knife 9/4

Postby Jacques » Thu Sep 05, 2019 1:30 pm

MistyBlu wrote:... But we'll wait for pathology...

MistyBlu -

It's good to hear that your surgery went so well ! It may take a few days for things to settle down to the point where they will discharge you, however. It just takes time.

In the mean time, if you want to prepare yourself for the pathology report, here is a document that gives quite a lot of information -- probably more than you would ever want. But it may serve as a reference when the doctors start talking in technical terms. By the way, be sure to get a printed copy of the full pathology report. Don't settle for just an oral summary of the report by the doctor.

Structured Pathology Reporting of Colorectal Cancer Specimens
https://www.rcpa.edu.au/Library/Practising-Pathology/Structured-Pathology-Reporting-of-Cancer/Cancer-Protocols/Gastrointestinal/Protocol-colorectal-cancer

By the way, there are some subtle differences between left-side tumors and right-side tumors. You had a right-side tumor. There are some members here with right-side tumors who did quite a lot of research on right-side tumor characteristics. Maybe some of them will chime in here to give their impression.

boxhill
Posts: 392
Joined: Fri Apr 06, 2018 11:40 am

Re: New Here and Going Under the Knife 9/4

Postby boxhill » Thu Sep 05, 2019 6:00 pm

Let me echo Jacques: get printed copies of your reports! You will find them useful going forward.

Also, if you cancer center has an online patient gateway, join it. You'll be able to see reports there also.

ETA: I somehow managed to miss your post-surgical post!

No lymph nodes and no mets: great news! Time to celebrate!! In that case, whether or not you and your team want to consider adjuvant chemo will probably depend on some more subtle factors. ( I think I may have described that scenario in another post, actually. )

Here's an article on the subject:

https://ascopubs.org/doi/full/10.1200/JOP.2016.017210

In the meantime, rest, heal, take pain meds when you need them--ie, don't be a hero :) --and walk when you can. I had an open procedure--can't recall what you were planning--so I was confined to ice chips the first day, and in fact eating too many of those made me throw up, the first and only time I've thrown up in this whole thing! When the eventually let me have a cup of bouillon, it was the most delicious thing in the world. :lol: Things I enjoyed in the hospital: my son read to me, I had them bring in a board game from home, and we all played Ticket to Ride. My son would walk with me, and we enjoyed visiting the huge aquarium in the junction of two halls, and named all the fish.
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

NHMike
Posts: 2323
Joined: Fri Jul 21, 2017 3:43 am

Re: New Here and Going Under the Knife 9/4

Postby NHMike » Fri Sep 06, 2019 10:28 am

Your results sound great.
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

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Sat Sep 07, 2019 5:33 am

Boxhill/ Jacques thanks for the info. It will definitely come in handy.

I was so worked up about not having a bowel movement and now day 3 post op I’m have several smallpox bouts of diarrhea. And worse leaking diarrhea (sorry TMI). Im considering wearing diapers until I get some solid food. The nurse said this should stop when I’m eating solids.

I’m going home today.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: New Here and Going Under the Knife 9/4

Postby MistyBlu » Sat Sep 07, 2019 5:35 am

MistyBlu wrote:Boxhill/ Jacques thanks for the info. It will definitely come in handy.

I was so worked up about not having a bowel movement and now day 3 post op I’m have several small bouts of diarrhea. And worse leaking diarrhea (sorry TMI). Im considering wearing diapers until I get some solid food. The nurse said this should stop when I’m eating solids.

I’m going home today.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

DarknessEmbraced
Posts: 3369
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Here and Going Under the Knife 9/4

Postby DarknessEmbraced » Sat Sep 07, 2019 12:19 pm

I'm glad you're doing well!*hugs* Walk as much as possible because it helps to get the bowels moving again. I'm glad you have good pain control! Wonderful news from your surgeon! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19


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